These testimonials are taken from Syndrome dunezvide.com . A patient association in France for those who suffer from Empty Nose Syndrome as a result of nasal surgery. Each heading is linked to the original article, which in most cases is written in French. The text is translated using ChatGPT.
The testimonies give a clear picture of how serious this condition is. The most common operations behind the condition are various types of operations on the respiratory organs of the nose: Nasal turbinates , as well as surgery on the nasal septum. There are also ENS affected patients who have undergone other types of surgery, such as sinus surgery or cosmetic surgery of the nose, although it is not as common that these surgeries result in Empty Nose Syndrome.
Operations that destroy the nasal mucosa and
nerves and which at the same time remove the natural resistance in the nose can
in many cases lead to shortness of breath, hyperventilation, sleep disorders
etc. and all this causes enormous suffering for the individual, life is
shattered. By reading the testimonies below, you quickly realize how affected
the affected individuals are. It is also realized that many individuals had
signed up for nasal septum surgery but at the same time had their turbinates
partially or fully amputated.
In recent years, many suicides have been
recorded after these types of operations. At the time of writing, there are
approximately 45-50 suicides registered, which is probably the tip of an
iceberg as these cases are only those registered in two English-language
Facebook groups for Empty Nose syndrome.
If you want to see memorial videos for these
individuals, follow this link: https://ensmemorial.blogspot.com
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ENS
Testimony from Maria (Belgium )
6 November 2021
Hello everyone, My name is Maria, I was born
with a congenital malformation that led to an operation with extensive medical
follow-up and thus a complete trust in healthcare. From this disability,
although I don't really like that word, I have gained a strength. I never
complained despite the violent pains, I was under treatment with Rivotril.
Since this medication did not suit me, the specialist said that I should try
another treatment to relieve my pain and avoid becoming like a
"zombie". In short, I managed to put up with all this after all.
My
problems started the day I decided to consult an ENT doctor with my partner,
for aesthetic reasons because I didn't like my nose. I want to point out that I
never had breathing problems, everything was fine. I just
wanted a nose without a lump to feel better in my own skin. During the
consultation, the ENT doctor did an endoscopic examination and diagnosed a
deviation in the nasal septum, he
suggested straightening my nasal septum, removing the bump on my nose and
raising the tip of the nose. He added that this surgery would be covered by
my insurance. I was overjoyed with what he offered, finally I would no longer
have the nose I hate, and at no cost to me! I moved on, not realizing how naive
I was.
Second visit: rhinomanometry, the ENT doctor
told me to carefully save the results in case insurance asked for them, which I
did. I asked if I needed to have a scan or x-ray before surgery. He replied
that it was not necessary and that he did not need all that. He never mentioned that he would touch my
turbinates, only that he would adjust my nasal septum and fix the aesthetic
part of my nose.
I accepted the operation. On the day of the
surgery, I didn't feel well. I came to the hospital with a fever, the nurses
kept taking my values, they were troubled and had a strange expression. I,
naive as I was, said it was probably due to stress. (I was an hour away from
home, I had to sleep there, alone, because no one could be present due to
covid). Before I entered the operating room, the anesthesiologist took my
temperature again. I really started to get scared, deep inside I had that
little voice that kept saying, "Maria, get out of here" but you know
what happened, because I'm here telling my story... I was dizzy, I got a Xanax
just before to calm me down, and my ENT doctor came to calm me down by stroking
my hand. I will never forget his gesture or his face which haunts me even today
after six months.
The operation didn't
hurt, but the big tampons in my nose together with the fever were hard to bear ,
it was really not a fun experience. Fortunately, I got to go home the next day.
The ENT doctor put me on Augmentin and
asked me to come back four days later. That's when my nightmare started, symptoms like sore throat, phlegm cough,
frontal pain and body aches appeared . Despite the rinses, nothing came
out.
My GP put me on antibiotics (I was on
antibiotics five times in four months). And there, miraculously, the antibiotic
worked: thick, sticky bloody mucus came
out of my nose. It was so compact that I pulled it out with my fingers like
pulling a string. I thought I was finally getting some rest, but I
started getting thick, yellow, sticky
mucus that was constantly running down my throat . My GP did a mucus
test which showed Pseudomonas Aeruginosa. Since
this was not normal, we requested the surgery report, and when I read it, I was
shocked: it said "bilateral turbinoplasty" .
I went back to the ENT and asked if he had
touched my turbinates? He said no at first, and when I insisted he said yes, he
had done a cauterization, and then he drew a picture to explain, saying it was
to make the clams symmetrical. He had thus performed this surgical act without
informing me, without my approval and without my knowledge!
I joined a group for Empty Nose Syndrome, many
reassured me, but deep down I feel that
my nose is no longer the same, it has
become dry. I don't have the same breathing, I get short of breath on exertion
or just cleaning, and the thick mucus is still present. I have difficulty sleeping.
Since
then I have been on sedation and I have resumed Rivotril for my pain.
I had a scan that my doctor ordered and
there, to my surprise, I found that there was only a small stump left on the
right side and that the left side looked fine. I posted this scan in the
group. I was told that the ENT doctor had not cauterized but cut out the
concha, while he kept claiming and even promising that he had not cut it out!
Another lie!
I go back to him with the scan results and
there I feel like I'm witnessing a comedy. He assures that everything is fine,
brings in an endoscopic camera and dares to say that my turbinates are still
there, that I have to drink a lot of water and swallow my mucus, and above all
he had the guts to say that my turbinates have already grown back! I am
speechless, stunned by his lies and bad faith. He missed his calling: he should
have become an actor or a magician!
Not
only that this quack has mutilated my nostrils, with all that that entails. It's hard to describe how this affects me on
a daily basis. It's not just the pain and discomfort, but also the mental burden of knowing this could have
been avoided. I feel let down by a doctor I trusted, and this has
created a huge sense of distrust
towards the entire healthcare system .
I hope that my story can serve as a warning to
others and that no one else has to go through what I have experienced. It is important that you are informed and
that doctors are transparent about what happens during an operation.
Finally, I want to say that I continue to
search for solutions and treatments to relieve my symptoms and improve my
well-being. Thank you for listening to my story.
Kind regards, Maria
____________________________________________________________
Testimonial by Luc (France) November 3, 2021
Hello
everyone, My name is Luc, and my problems with my nose started five years ago
when I was forty-one years old. Before that I had never had any problems with
my nose or sinuses. I swam regularly, ran and dived (level 4), and I wanted to
become an instructor. I have undergone two endonasal surgeries.
Five years ago I had sinusitis followed by the
flu. I was treated for two years with ineffective courses of antibiotics,
corticosteroid spray and nasal irrigation, but nothing helped. After a scan, my
ENT doctor diagnosed pansinusitis and bilateral nasal polyposis. He suggested a septoplasty because I had a
deviation to the right, and assured me that it was nothing serious, that I
would breathe better afterwards, and that it would stop my sinusitis.
First endonasal surgery: Septoplasty (September
2018):
I underwent
the operation. The result was disastrous. My right side feels too open .
A significant posterior flow occurred, forcing me to spit up all day. I wake
up at night to spit because mucus gets stuck in my throat. I feel like I'm
drowning.
I went back to the surgeon, who did not take my
concerns seriously and sent me on to his assistant who prescribed an
ineffective corticosteroid spray for two months. I consulted the ENT again, who
made it clear that I was bothering him, and said that his work was well done
and that my symptoms were probably due to my anxiety.
I met with other ENT doctors. They all said
that my septum was straight, that I had inflammation of the lining on the right
side, visible on nasofibroscopy, which was causing the flow, that my sinuses
were no longer blocked, but they also noted that the polyps were still there.
I was referred to a well-known professor of
ENT. After negative tests and ineffective topical treatments with sprays for
over a year, the professor suggested a total bilateral ethmoidectomy, the only
operation he believed could resolve my posterior flow. He assured me that the
operation would not worsen the flow, that I was young and that it would be a
shame not to carry it out. I pointed out again that the examination showed that
the inflammation of the nasal mucosa on the right side remained after the
septoplasty.
Second endonasal surgery: Total bilateral
ethmoidectomy with bilateral turbinectomy of the middle turbinates (September
2020):
I accepted the operation. After a slight improvement in the first six months, today, one year
after the operation, it is much worse than before. The flow on the right side is constant and thicker, it flows profusely
and the discharge is white, sticky and thick. I feel that there is even more
space in my nose, and I have the impression that I do not feel the air passing.
On the post-op scan, I discovered to my horror
that the professor had removed my middle turbinates, and that he had performed
a bilateral middle turbinectomy at the same time as the ethmoidectomy without
informing me. However, he had specifically said before the operation that he
would not touch the turbinates.
I went back to him. He said he doesn't
understand why the flow hasn't stopped, that it should have. I then asked him about
the removed middle turbinates and whether there is a risk of Empty nose syndrome. He got annoyed
and said I need to stop reading nonsense on the internet, that the middle
turbinates have no function and that they hadn't touched my lower turbinates.
He added: "I don't know what you have, but you don't have Empty Nose Syndrome. "
This is where I am now, my nights are
difficult with many awakenings, I no longer do any sports, and I have no social
activities anymore. I feel
handicapped, I breathe badly, I no longer have the deep breaths I used
to have. It burns in the nose. I
spit white and thick mucus all day and night too.
At work it is also very difficult in this
condition. I see no possibility of
career development or change of position. I feel people mocking me behind my
back for snoring or spitting. It is difficult to imagine a retraining.
I
recently take anti-anxiety medication to cope. I
have lost weight, I have lost interest in all activities. I snore constantly,
it flows all the time. Sometimes I
hyperventilate without realizing it. I'm not living anymore, I'm
surviving. I feel disabled. I
feel like I've been mutilated. My life has been ruined. My girlfriend is suffering from seeing me
like this. My parents, who are seventy-five years old, also find it difficult
to see me in this state.
So, I want to say to all of you, if you don't
have cancer, never operate on your nose or your sinuses. If you have sinusitis, keep it, it's better
than anything else. A crooked nasal septum? Keep it too.
ENT doctors will say, "It's nothing, it's
a harmless operation," and if it doesn't go well, they'll say you're
anxious and it's all because of that, even if you only became that way after
the operations. Then you will notice that when something goes wrong, they want
to get rid of you. You quickly understand that the person you trusted and to
whom you entrusted such an important organ as your nose, does not want to see
you anymore. They don't care about lawsuits, they're long, they have insurance
and it's hard to prove anything.
One
last thing, only those who have a similar course can understand. Our friends,
our surroundings don't understand us, it's hard. My
first surgery hurt me, and the second one by this professor ended the havoc.
____________________________________________________________
Testimonial
from Nathalie (France)
May
21, 2021
On March 8, 2021, I was operated on for nasal
polyps ("complete filling of left ethmoidal-frontal sinus and right
ethmoidal") by Doctor R, ENT doctor in Marseille. This ENT doctor performed
a "total bilateral ethmoidectomy, a meatotomy with a wide opening of the
maxillary sinus, a cauterization of the inferior turbinate and the root of the
middle turbinate, and a septoplasty." That's what my surgery report says.
When I
got the report I was horrified and dismayed that the surgeon had performed five
surgeries for nasal polyps . He had never informed me in
advance that the surgery would be so invasive and that he would be doing all
this.
Since the operation I have had a lot of
difficulty breathing and it is worse than before. I suffer from severe
headaches. My nose burns and is very dry. I don't breathe normally anymore. Every
time I return to the ENT doctor he says that "apart from some scabs, he
doesn't see anything that prevents me from breathing, that I'm probably
stressed and that it's psychological", but I know that these symptoms are
a result of the surgery and that it is not imagination.
I have spent hours on the internet trying to
understand what is happening to me and I have discovered Empty nose syndrome,
your association and your group.
I am aware that my surgery is relatively recent
and that final healing takes a long time with endonasal surgery (between six to
eight months, up to a year) before definitive conclusions can be drawn, and
that I must be patient.
I am hoping that these symptoms are related to
the healing and will go away with time, but I am concerned because this ENT
doctor performed a reduction of the inferior turbinate and middle turbinate.
I am now very afraid of suffering from the consequences of endonasal surgery and/or Empty nose syndrome, this iatrogenic disease that develops after endonasal surgery or operations on the lower and/or middle turbinate, or in patients who have undergone multiple operations. Nathalie
________________________________________________________
Testimonial from
Guillaume (France) April 14, 2021
Since childhood, I have had a crooked nasal
septum. I always had one nostril blocked with what I later learned was
alternating rhinitis, meaning the blocked nostril switched sides several times
during the day. This phenomenon is due to the swelling of the lower turbinates
in an alternating manner. I thought, wrongly, that it would give me more
comfort to have both nostrils open at the same time and that it was only
necessary to "correct" the nasal septum to achieve this extra
comfort.
I made
an appointment with the family ENT doctor who confirmed that my nasal septum
was crooked and that I would benefit from surgery. He
sent me on to a specialist in a hospital in Paris for this operation. The
specialist at the hospital received me and said he would operate on me. He did
not suggest any medical treatment in advance and gave me no other options
without describing the planned surgery. I'm not entirely sure of my memory
since it was a long time ago, but it seems he mentioned removing the nostrils.
When I asked what they are for, he replied that they are of no use. I therefore
imagined that it was a very small thing, like an insignificant piece of cartilage
because they have no function. I thought I would have time to get a second
opinion before surgery, but I was remiss on that point.
At the beginning of August I went on holiday
abroad and still hadn't seen another ENT doctor. I thought I would have confidence
in the medicine and I looked forward to having both nostrils open at the same
time. I came home from vacation and was going to the hospital that evening. In
those days there were no smartphones to check information on the internet and
the internet connection at my parents was very slow, pages sometimes took an
hour to load! Therefore, I hadn't checked the internet and didn't have it
reflexively at the time. I didn't take the time to seek a second opinion.
I came to the hospital and asked to see the ENT
doctor to ask questions, but I was told that I could ask them the next day in
the operating room because he was not there. It was still possible to pull out
at the last minute, but since I hadn't had any bad experiences with the
medication, I figured they knew what they were doing. Still, I worried that I
didn't really know what to do. I didn't have the opportunity to ask any
questions because I was sedated the very next day. Upon awakening I spat blood
and filled several containers with blood. The ENT doctor said I had a bleed.
Contrary to what I had expected from this surgery, which I thought would be
simple, I came home the same day with packing in my nose and intense fatigue
that lasted for several days.
After the packing was removed I noticed that
the air passed through my nose much more easily, but very quickly I noticed a
change in my sense of smell, with strange and altered smells.
Also, I felt the nasal cycles become
chaotic as if the turbinates were trying to swell but since they were gone, it
gave very strange sensations in the nose. And above all, huge crusts formed
all the time, as big as the turbinates that had been removed.
Over time, the crusts decreased, but not
completely. I thought these side effects
were temporary, but after eighteen months it had not improved, on the contrary,
I experienced more and more dryness. I went to a specialist and that's when I
realized that all the lower turbinates had been removed (a radical bilateral
turbinectomy). The ENT doctor said it should never have been done.
From
that moment I felt completely vulnerable to amputation. I started having
anxiety attacks and depression and had to seek help and take anti-depressants
to deal with this disability. Other symptoms appeared like
shortness of breath, a feeling of paradoxical obstruction and above all
burning sensations in the nose when the air passed, the feeling of too much air
coming in, a feeling of emptiness and hyperventilation.
I lost
my job because I was completely exhausted and spent time in a psychiatric clinic.
After a few months, thanks to treatment
and antidepressants, I eventually began to recover emotionally. I breathe
through my mouth because breathing through my nose is too painful.
I have
seen Dr. Houser in the US who suggested an Alloderm transplant, but I decided
to take time to think because I was afraid that my situation would worsen with
another operation. I have since experienced more severe depressive relapses,
including one right now with dark thoughts.
I have
applied for compensation with the CCI (a form of conciliation procedure) which
ruled in my favor by stating that there was a lack of operational indication
decision. Nevertheless, the compensation is symbolic in my eyes because my
disability is permanent and the impact on my professional life is very great. I
work on a budget and in step with my crises.
Today I am considering doing hyaluronic acid
injections and seeing if the benefit achieved would allow for an implant, but I
am unsure if the implant should be cartilage, tricalcium phosphate, Alloderm or
something else. Guillaume
_____________________________________________________________
Hello, Unfortunately
I discovered your association too late; the damage is already done. I underwent
a first surgical operation in January 2019 with Dr. L otolaryngologist and
facial surgeon in Neuilly.
The purpose of the
surgery was to lower the nose to correct a lip opening problem. After
examination, the otolaryngologist also diagnosed an oblique nasal septum. Until
that day, I had never had any ear-nose-throat problems. My last cold was
almost 20 years ago. He also took the opportunity to completely reshape the
nose (removal of the bump).
I was surprised to
read in the surgery report that, without informing me, he had performed a
turbinectomy (resection of the turbinates) in addition to the septum and
rhinoplasty work. During the following year I had breathing problems but also
problems with my lip.
New surgery in February 2020 to correct both
problems: Lifting of the "upper lip" by drilling out the bridge of
the nose to push it back and reduction of the nasal turbinates with laser.
After the packing was removed I had a terrible
feeling of an empty nose with the inability to breathe naturally, this was for
about 30 minutes before the nose partially blocked with blood clots.
The situation was
relatively stable for a year (apart from the impossibility of wearing a mask)
but worsened sharply at night (January 2021): the nose was completely
blocked in one nostril with alternating blockage depending on the position and
a sudden loss of pressure during inhalation and exhalation both day and night.
Insomnia due to suffocation. Since then, these
symptoms have worsened.
I went back to see
the doctor, but he hides the truth by making a wrong diagnosis: chronic
allergic rhinitis. He prescribed a cortisone spray which of course I didn't
use. I have none of the symptoms described for this type of illness.
I am lost, exhausted with fatigue. I only sleep
for short periods of 1.5 hours, a total of 3 to 5 hours per night. I won't be
able to last much longer like this.
By reading your blog
I see few solutions. Are there prostheses that can at least be used during the
night? Few doctors treat this problem. I am in Paris. Thank you for your help. Claire
Story by Stéphane
(France) December 20, 2020
It all started with a banal sinus infection in
June 2018. After several ineffective antibiotic treatments, all the infected
mucosa remained, from maxillary to ethmoid and up to frontal, on the right
side.
August 2018:
I decide to consult an ear-nose-throat (ENT)
doctor, who is convinced that this sinus infection is due to a nasal septal
defect, even though no one has previously made this diagnosis. He recommends a
septoplasty with medial metatomy to clear the sinusitis.
October 2018: Middle metatomy (first endonasal
surgery):
I finally make up my mind and undergo surgery
at Castelnau. The ENT doctor does not think it is necessary to do a septoplasty
in addition to the middle metatomy, because I have never had sinusitis before
or any other problem. We therefore proceed with a middle metatomy on the right
side to clear the purulent mucus that was blocked. The post-operative X-ray
which was taken a little later was almost identical to the pre-operative X-ray:
this operation therefore had no effect. This ENT doctor nevertheless had the
merit of not touching the turbinates and was careful to widen the middle
metatomy.
End of 2018:
He continues to follow me up. Since my problem
persists, he suggests a second, more invasive operation, without ever
mentioning any action on the turbinates. I accept at first but back off on the
advice of my father, who tells me that this ENT doctor has a bad reputation. My
father talks about Professor C, who has an excellent reputation in the region
and who has operated on his boss's brain. My father's argument is convincing,
so I make an appointment with this "famous" professor.
Beginning of 2019:
I consult several times with this professor,
whom I perceive as haughty and rarely smiling but who seems knowledgeable. He speaks in technical terms that put me at
ease for the moment. He also says that a septoplasty is unnecessary, suggests a
repeat of the middle metatomy on the right side with a turbinoplasty on the
inferior turbinate, and adds that "my inferior turbinates are too large,
they need to be reduced and I will breathe much better afterwards" .
My family members advise me to trust him because he knows what he is talking
about. I mention the risk of Empty Nose Syndrome after doing some searches
online. What should I do? I hesitate. I have a bad feeling that I can't
explain.
I send an email to let him know that I actually
just want to do the middle metatomy without touching the turbinates initially
and see him again for a consultation on this. The professor doesn't understand
why I don't want people to touch the turbinates. I am then talking about the
risk of developing Empty Nose Syndrome after reduction of the nasal turbinates.
His reaction surprises me as he quickly becomes irritated and insists. He says:
"Stop reading reviews on the internet or you won't get ahead. Empty Nose
Syndrome only develops after the entire nasal concha is removed. On one hand;
there is no risk. I have used this technique on my colleagues and it has
relieved their symptoms."
I am asking for more information about the
radio frequency treatment. He gets irritated again, avoids the topic and
immediately ends the meeting with: "The consultation is over, I've said
enough, we don't have time, stop asking questions." I agree that the radiofrequency treatment will only be performed on my
lower right nostril and that this reduction will be minimal. For the left side,
we will see later.
In retrospect, if I had read SNV forums and
read testimonials from sufferers before, I would never have accepted this
surgery or listened to this professor who lied to me.
March 2019: Repetition of middle metatomy on
the right side with turbinoplasty on the lower turbinate on the right side
(Second endonasal surgery):
The
operation was carried out in March in Montpellier. The operative report states
that the professor had to perform a partial turbinoplasty to perform the middle
metatomy. Why? Since during the first operation his
colleague did not need to do a turbinoplasty and other ENT doctors consulted
talk about reduction of the middle turbinate in some cases to facilitate access
but never about reduction of the lower turbinate for a middle metatomy... In
addition, there there is a greater risk of developing Empty Nose Syndrome when
operating on the lower nasal concha...
The
postoperative consequences were painful. When
removing the tampon after the first operation I hardly bled, but this time it
was different, I still remember the day two when the professor removed the
tampon. I was bleeding profusely, I had blood on my shirt and pants, but the
professor didn't pay attention and even went to attend to another patient. A
nurse took over and helped me stop the bleeding that continued, giving me ice
cubes to swallow. After twenty minutes the bleeding stopped. The professor then
returned to examine his work. For him, everything was perfect. Then there were
appointments to remove the scabs and soak up the stagnant blood. The professor,
still as straight to the point, did it "sloppily" as they say to suck
without considering the nerves damaged by the operation. This is how I felt...
March to July 2019:
I did
not experience any improvement after the surgery. At
each consultation it was the same refrain, the professor assured me that I
should be breathing better now, which was not the case. He says, "You seem
worried and stressed, it will be fine." In reality, it's not good: I'm not breathing better and I also have nasal pain on the operated side as I
tell him . The only explanation he has is: "It is possible that you
are taking longer to heal because of the pain." (These pains and symptoms
have worsened since then.)
July 2019 to January 2020:
I consult a new ENT doctor who prescribes an
anti-inflammatory and says that my nose on the operated side is quite good,
maybe even too open, and should not be touched again for the risk of developing
Empty Nose Syndrome . The anti-inflammatory is working and the surgery seems to
have finally paid off. I breathe well and have no pain from July to October.
In the meantime, I see the professor again and
ask him to reduce the left turbinate because the non-operated side bothers me
especially at night (it collapses against my deviated nasal septum). He says
that in addition to turbinoplasty on the left lower nostril, he will also do a
septoplasty. At the last minute, due to my intuition, I cancel the first
appointment in June and the second in January, because I was still in pain in
June and in January, the nasal pains returned with the cold season, which
worsened and became permanent from January 2020.
From January to December 2020:
Physically and mentally I feel very bad because
my pains are not normal . After surgery, I thought
these disabling symptoms were due to healing and that I would have to be
patient, but now, eight months after surgery, there was no logical explanation.
I thought about Empty Nose Syndrome ,
the only reasonable explanation for these pains. I am sure that I have Empty
Nose Syndrome and that this turbinoplasty (surgery of the nasal
turbinates) is the cause.
I return to the professor with my father in
January 2020. After an endoscopic
examination, he still finds his work to be perfect, even though I tell him
about my chronic disabling pain, my difficulty breathing, sleeping, etc., and
he finds no explanation. He claims that it is because I have convinced myself
that I have Empty Nose Syndrome that I have developed these pains, and
that these pains are 100% psychological and not functional at all. This
professor is stubborn and continues to do so.
To my great sorrow, my father
"swallows" the surgeon's words and believes after this conversation
that my symptoms are psychological, that I need to calm down, do activities,
think about other things, use essential oils and nasal drops and, in the worst
case, try hyaluronic acid injections, a completely inappropriate and outdated
opinion considering my experienced pains which are far too strong to be just
mental.
I tell the professor that I know he has been
one of the otolaryngologists who wrote the formalized consensus report on Empty Nose Syndrome in 2012, a report
that officially legitimized the existence of Empty Nose Syndrome in France through the ENT Corps. He replies
that he does not remember... I tell him
that he knows very well that Empty Nose
Syndrome exists even for partial reductions of the nasal turbinates,
that this iatrogenic disease caused by endonasal surgery is not uncommon but affects
20% of those who undergo a turbinectomy.
I wonder if this professor has read the studies
of his distinguished colleagues in ENT who have written about Empty Nose Syndrome and which
stipulate that one should not remove more than one third of the turbinate to
avoid the development of Empty Nose
Syndrome , or touch which itself the head or tail of the lower concha to
avoid developing a miserable condition for the person.
How is it that a famous professor in France in
2019, when I had my meetings with him, still believes that Empty Nose Syndrome
only develops after total turbinectomy? Studies
and work by Scheithauer, Passali, Houser and others have shown that Empty Nose
Syndrome can occur after both total and partial resection of the lower or
middle turbinates. They also show that there is a risk of Empty Nose Syndrome
after procedures on the nasal turbinates, such as turbinoplasty, cauterization
or radiofrequency.
I can understand that my pain may be partially
psychological, but my symptoms have a clear functional cause. They are a direct
consequence of this turbinoplasty, which will later be confirmed by Dr. B, ENT
doctor in Valence. The second surgery performed by Professor C has caused Empty
Nose Syndrome
The months go by and look the same, my pains persist.
I take no pain meds except an anti depressant as my previous GP (who I have
changed now) gave me no pain relief despite my sufferings and also thought it
was mental.
May 2020 : I
visit Dr. GB, head of the ENT department at the CHU in Valence, who was
recommended to me on the Empty Nose Syndrome forum for his fat injections. My
father has kindly accompanied me. I remember the journey in the car; despite
the warm weather, the atmosphere was cold, and the music was played at high
volume. It felt like I was bothering or that he was bothered about taking me to
an ENT doctor out of our region. He was honest and had integrity, which
contrasted with the four ENT doctors I saw at the beginning of the year, who
had also assured me that everything was fine. Their positive judgments had
reinforced my family's belief that I should not consult more ENT doctors
because they felt it was not worth it unless I had something serious. But now I
understand that it is really worth consulting an ENT doctor who has no direct connection
with the person who operated on me.
During
the consultation, Dr. GB listens attentively without interrupting. I tell him
about my surgeries, my feelings, and he seems genuinely touched and sad.
Finally an ENT who takes me seriously and understands what I'm going through,
I'm not used to that. He finally says, "You likely have Empty Nose Syndrome , but I need to
examine you and see your x-ray to be sure." Very quickly, the
investigations confirm what he believes. In the picture, he shows me the area
where too much of the turbinate has been removed, the cause of my Empty Nose Syndrome .
He honestly says that there is no miracle
surgery, only that he can offer a fat injection to try to relieve me. For the
first time I am dealing with an honest, human and thoughtful ENT doctor. He
says: "I have operated on only four patients with Empty Nose Syndrome using this technique and the results are
uncertain and unpredictable, depending not on the professionalism of the
surgeon but on our body accepting or not accepting this graft."
I drive back from
Valence, with the same cold and oppressive atmosphere with my father in the
car. I remember when my father stopped to get something to drink and offered me
something. It was scant consolation considering I had just told him that the
ENT doctor had diagnosed me with Empty Nose Syndrome. His lack of reaction left
a bitter aftertaste; it didn't seem to affect him that I had Empty Nose
Syndrome. It felt like he didn't care, even though he has a big responsibility:
if I hadn't trusted his opinion, I wouldn't be here today, even though I know
he thought he was right and didn't do it on purpose .
I can't help but be
disappointed in him. I am disappointed that he recommended me to this professor
and that he told me to trust him for the radiofrequency treatment. I am also
disappointed with the consultation in January where he blindly believed the
professor instead of me. Most people would have cut off contact, but I chose to
remain silent first and act as if nothing had happened: suffer in silence. Then
I created a discussion group "ÖNH" on Messenger with members of my
family. My mother is very receptive, answers and gives advice. My wife was
sorry for me, but quickly became irritated and tired and eventually withdrew
from the group. My grandparents are divided and my father has finally started
to believe me and admit that my symptoms are not mental, but I get the feeling
that it is wearing him down.
What should I do now?
I have heard the opinions of two other sufferers of Empty Nose Syndrome who
have received fat injections from this ENT doctor in Valence. They say their
breathing problems have improved, from 2 to 7/10 for one of them, which is positive.
As far as I'm concerned, it's mainly the pain that's disabling and on that
point these two people have said that the fat injection didn't relieve their
pain, and that they have to take painkillers that only give partial relief .
One of them says that Durogesic patches with morphine provided pain relief for
two years (pain reduced from 8 to 3). Therefore, I have not yet made a decision
about this operation.
Currently my pains are neuralgic and
neuropathic. I have become hypersensitive to temperatures and weather
conditions. Outside, I can no longer cope with the cold and dry air that enters
my nose without being heated or filtered; it feels like the air is hitting my
mucous membrane and the damaged nerves causing a triad of painful symptoms that
nothing relieves.
This surgery has a detrimental effect on my
personal life: I manage the
family as best I can. I often complain in the ENT group and I understand that
it tires my wife. As for my daughter, I try to act like everything is fine. Not
easy... It has also affected my professional life, because in January I missed
a promotion. The pain was too strong, I couldn't perform the position I wanted
so badly.
Life seems endless and every day is a trial
because I suffer constantly . These
pains are difficult to make others understand, who often think I am
exaggerating , but anyone who suffers from this chronic pain that is
present even at night would eventually become depressed, isolated and lose
social contact.
With my doctor we try different treatments for
pain. Some have no effect, others relieve me moderately but none make me live
normally. I always have the feeling of having to fight. Constant mental
motivation is required. A
recent example: I went to pick up my daughter from school. Before I went I was
happy and relaxed, but when I was outside and by the school, with the cold
wind, the pains came back in full force: they ruined the reunion with my
daughter. I have many such examples that destroy these moments of happiness and
make life, which is usually so beautiful, a constant struggle.
So yes, I often act like nothing is wrong. Yes,
I sometimes have dark thoughts when I am in this state . But when my pains give me a few moments of relief,
my mood miraculously returns and I regain my zest for life.
I live
mainly for my daughter and my wife rather than for myself .
I could give up and just sit at home, alone in my corner and try to deal with
my pain, but that's not a solution. What
I feel: a very strong pain, it's like when you have a toothache and eat
something very cold, the intense cold on the teeth like an electric shock for a
few seconds, the same painful feeling with burns in the nose, throat, etc.
You could compare it to ice cubes in the nose! The pain also radiates into the maxillary sinus and palate.
Sometimes I hope that my pain will go away with time, maybe with the fat injection and that the damaged nerves will recover or that a pain relief treatment will work. I want so badly to see my daughter grow up and take care of her through all the stages of life. I regret this surgery so much, especially since I didn't want anyone to touch my nostrils and it was the professor who insisted on doing it, which is even more frustrating... Stéphane
___________________________________________________________
Testimonial from
Jessica M (France) August 16, 2020
As agreed by phone
today, I am attaching herewith an explanation of my "case", what has
happened to me, and the various documents requested:
1: The operative
report of my endonasal surgery on 17/12/2018 in which the ENT doctor
performed: a septoplasty with removal of the deviated part of the septum, a
bilateral turbinectomy of the middle turbinates , an anterior
ethmoidectomy, a middle meatotomy with middle expansion at the expense of
the inferior turbinate and finally a "bilateral turbinoplasty of the
inferior nasal turbinates by radiofrequency treatment. These five
procedures, with the exception of the septoplasty, were performed without my
prior information and without my consent.
2: Prescriptions from
my current ENT doctor, my scans and reports. I have also attached my medical
certificate, so that you have all the information about me.
My name is Jessica M
and I turn 38 on October 24th. Since 2007 I've had sinus infections (I remember
that date because that's when I started working and because my sick leave was
mostly due to sinus infections). I also had them before and during my studies,
usually three to four times a year, and in recent years between four and five
times a year. I have often been given antihistamines and antibiotics
(Augmentin), to no avail.
March 2017 : First consultation with Dr. B, recommended by a
doctor. My GP at the time (who I have since changed) was no more concerned than
the ENT doctor. He gave me an antihistamine and a scan prescription, but my
sinus infections returned.
December 2017 : My sinus infections persist, so I consult a new
ENT doctor, the "famous" Dr. PB that I was recommended. He again
prescribed antihistamine and another X-ray. To him, everything looked good.
During this year I did not take care of my health, too busy with my new job and
personal concerns.
December 2018 : Since I still had sinus infections, I went back to
the ENT doctor who had said to come back four to six months after finishing
treatment. This time his statement changed: "He was surprised that no one
had said that I have an ethnic mix (my father is from the Congo and my mother
is from Turkey/Czech Republic) and that I am thinner than average.
He prescribed me to
undergo more advanced tests and did a fibroscopy. During the examination: on
the right side everything was fine, it was unpleasant but not very painful. On
the left side, however, "I flew up to the ceiling". It felt like he
had bumped into something. He said that I had a small tumor (I thought that was
a rather harsh word) and that there was no doubt that I needed surgery quickly,
and he would also take the opportunity to widen my 'ducts'. He never spoke
about the method of surgery or what exactly he was going to do. I asked
questions, but he answered vaguely and quickly.
To calm myself, I
told myself that he knew what he was doing and that it was a surgeon
(generally, a surgeon never has time). I trusted him and of course I was very
foolish not to take more interest in the operation, convinced that he had made
a diagnosis of "atrophied ducts" for ethnic reasons and because I
allegedly had a tumor to be removed.
I had surgery on
December 17, 2018 at the M L clinic in Paris, in the eleventh arrondissement. I
insisted on not doing the surgery as day surgery, because I didn't feel safe
with surgeries (I've had a few, including one with a difficult awakening, and I
react like a child when I get to the operating room...) and also because I was
afraid of bleeding as he had mentioned. And I was right!
When the nurse
removed the tampons, she explained that normally it would have been the doctor
who did it, but with this doctor it was always the same, I was "literally
bleeding" and she hesitated for a long time before letting me go. When I
got home there was another bloodbath, and my parents wanted me to call the
surgeon, but I didn't dare, and the next day it stopped.
When Dr. B came to
visit me in the room the next morning after the operation, he was very rude and
gave me no comfort, did not talk about the famous "tumor" or the
operation. He just said, "I'll see you in a week". It was the nurse
who, worried about my condition, said that he was probably irritated and that I
shouldn't take it personally... He didn't give me any prescriptions even though
the effect of the anesthetic was wearing off and I was in obvious pain. It was
the nurse who had to ask an anesthetist to write a prescription before I could
go home.
A week later, I
returned for a postoperative follow-up. I was panicked and worried, felt my nose
which was hard and swollen and didn't understand why. It was I myself who, by
examining myself, realized that I had braces, he had never said anything about
this. I pointed this out at the meeting as well as his inappropriate behavior
the day after the operation which had shocked me. He apologized and suddenly
took the time to answer my questions. When I mentioned the "tumor",
the results, etc., he remained evasive and said everything was fine. You will
see that nothing about this is mentioned in the report.
I met him again a
month later. I still had crusts coming out of my nose, it still hurt, etc., and
the same after three and six months, everything was still normal for him. I
started insisting because every time I told him something, he laughed. He smiled
as if he didn't believe me: "So?", "Hmm, no one has said that
before", "You know, this operation takes a year to stabilize",
"the sense of smell is very unstable, it is normal that it is not same
every day", etc.
In my ears I heard a creaking noise as I
snowed. I always had
blood-like secretions coming out, and I couldn't (and still do) bend forward
without very severe pain in my sinuses, headaches (which I usually didn't
have before, except for sinus infections), I was in constant pain in the
sinuses, etc.
January 2020 : I had a meeting with him and had decided that I
would not give in until he clearly answered my questions, but I had to cancel
due to personal problems and then due to the Covid-19 restrictions. At this
point I have not completed the consultation as I no longer believe this ENT
doctor. I don't plan to see him again because I'm still suffering. This
decomposing operation has been in vain, I have the feeling of having empty
nostrils (when it's cold it feels like I have no nose), I have bad breathing,
because I hardly feel anything unless I put "something" in the
nostril . I have again very infected sinus infections which I am now
treating myself naturally because I took too much Augmentin in the past.
On Saturday night,
when I was hit with another sinus infection, I did something I've never done
before: I read reviews about this ENT doctor on Google. There I was shocked – I
saw my own story in one of the comments. A patient had described how Dr. B said
that an operation was necessary but who had then sought an opinion at another
clinic. That's when I realized I should contact Professor C or someone from his
team to get an assessment as to whether or not this surgery is a failure.
This morning I
requested a copy of the operative report which I had not previously received. I
tried to call the clinic without success and therefore sent an email. An
hour later I had the report, and I discovered that my middle turbinates had
been removed - something I hadn't been told about before.
Here is my story. I may not have been concise and I am truly sorry for that. I haven't even mentioned all the details, like being late for a meeting or the slight punch to the nose. After years of suffering with sinus infections, it has been a morale blow to learn that the painful surgery may not only have been ineffective, but possibly even worsened my condition. Sincerely, Jessica M
_______________________________________________________________________
In memory of Marcio Goulart, victim of Empty Nose Syndrome, deceased on April 21, 2020 . Published July 16, 2020
Hi, yes, I knew
Marcio. We talked on the phone every day. He was a very kind and humble person.
It was always nice to talk to him. He suffered immensely. He felt suffocated
and had panic attacks every day. He could not walk without experiencing the
sensation of suffocation. He had had 90% of his middle turbinates removed on
both sides . He went to Italy to see Dr. Piazza and investigate the
possibility of getting implants, but Dr. Piazza refused to operate on Marcio
because he was afraid that Marcio would become even more blocked based on what
Marcio had told him about his symptoms. Marcio became very depressed after that
visit and unfortunately he tried to take his own life shortly afterwards. He
survived that suicide attempt.
Marcio was very
active on forums for Empty Nose Syndrome Awareness. He talked to many people
there. He tried to see if he could get implants with Dr. Das, but money and
travel problems were obstacles. He always told me how much he suffered and how
his life had been normal as an English teacher in Brazil before. He had had
great success before his septoplasty and the surgery to reduce the turbinates.
After the operation, he was forced to quit his job and became permanently
disabled. He compared his breathing to breathing through tiny straws all
day and felt a constant sense of obstruction.
His family did not
take his condition seriously at all. He always told me he didn't know what to
do. Unfortunately, he bought a firearm from someone he had met online. He
had told me and a few others about this. He hid the weapon somewhere in his
house and one night he took it out and shot himself in the head. I could
do nothing to stop him. He had gone on Facebook to say goodbye to this cruel
world before pulling the trigger . The ENS community was devastated. Marcio
was much loved by everyone in the groups. It was a shock to all of us. Marcio
could no longer endure the terrible suffering and could no longer accept his
condition." / Mark Lewis
___________________________________________________________
Testimony
Henri
L ( France)
July 8, 2020, Syndromedunezvide
Hello everyone,
My name is Henri and I live in Brest. I am not
sure if I suffer from Empty Nose Syndrome, but what I do know is that since my
failed septoplasty in 1972 I have had a septal perforation, disabling breathing
problems and stomach symptoms. My condition has deteriorated significantly over
the years.
I have not been able
to get hold of my surgery report (because my surgery is too old). I also
don't know about Dr. B, in addition to the septoplasty, also affected my
turbinates, but I have severe disabling symptoms: dizziness and severe
headaches, sinus pain and facial pain, nasal obstruction, dryness and burning
sensation in the nose, crusts, ear plugs, excessively open nose, lack of air,
posterior epistaxis , disturbed sleep with night awakenings, fatigue,
depression (I am currently on Lyrica). I will soon have a x-ray regarding
this.
I remember the severe post-operative
consequences; I was more frozen with the horrible sensation of cold, unfiltered
and unheated air suddenly rushing in upon inhalation. I had secretions in my
throat, lots of greenish and whitish crusts blocking my nose, and I got severe
bronchitis soon after. At the age of 32, it was the recurring sore throats and
stomach pains that disabled me. In
1986 I consulted Professor J at the CHU in Brest, a colleague of Dr. B, who
diagnosed me with a large posterior perforation of the nasal septum , vasomotor
rhinitis , an allergic tendency and posterior rhinitis.
I have met several
ENT doctors who have always asked the same question: "But who operated on
you?" None of them really helped me. The last one said, "You have no
septum left, a big hole in your nose. If you had a small perforation I could
have done something, but here I can't do anything," and left me with no
treatment, help or recommendations. I was completely demoralized.
Since that operation,
I have had time to document myself. Two questions keep coming back:
- Why did Dr. B me for a septal deviation when I
had a vasomotor rhinitis and an allergic tendency, because I have learned
that a vasomotor rhinitis, like a chronic sinusitis, is not operated on?
- How could this charlatan suggest a septoplasty
given my medical and professional background without understanding that
his failed operation, because it resulted in a large perforation of the
nasal septum, would worsen my condition?
This ENT doctor knew:
1. That as a child I had undergone a tonsillectomy (removal
of the tonsils, which is a defense against external infections), which probably
weakened my immune system. (This was a common practice in my day, but it has
since been abandoned because it was found that children whose tonsils were
removed became more vulnerable and sick, which was my case…).
2. That I worked as an electrician on construction
sites, exposed daily to dust, toxic smells and in contact with toxic materials.
A profession I practiced for 30 years…
I conclude with an extract from Professor K's report: "Mr Henri L has always been sensitive in the nose and this condition is the result of a vasomotor rhinitis, where the parasympathetic system causes this increase in the posterior rhinitis. Such a condition explains the hypersensitivity which his mucous membrane exhibits (...) During childhood, complications of rhinopharyngitis led to a tonsillectomy, and I note with surprise that this operation was performed by a colleague of the same name in Dunkirk note that the result is very beautiful because there is a large perforation of the nasal septum, the examination shows a residual rhinitis that leaves a dry streak on the pharyngeal wall , but our patient will find it difficult to filter all the dust and toxic fumes associated with his profession." Henry L
___________________________________________________________
Valérie's
testimony (France) 18 June 2020, Written by SNV
I underwent two nasal operations which left me
disabled and disabled and which turned my life into a real living hell. Since
these operations I have been forced to stop my professional life and my
condition has worsened. I have developed Empty Nose Syndrome with all the
problems it brings because I had a Turbinectomy: resection of my middle and
lower turbinates.
Since then I suffer from secondary atrophic
rhinitis with the presence of permanent purulent scabs, ozena, staphylococci,
paradoxical nasal congestion, disturbed sleep etc. and secondary consequences
with serious consequences for my professional life, family life and social
life.
Only my attending
physician understands me; I apply fatty oil three times a day and do many
rinses, but I haven't had a normal night in three years. I'm choking and I'm
gagging because I have constant backflow and many other symptoms listed in the
Empty Nose Syndrome Questionnaire: SNOT 22, ENS6Q, and ENS6Q Modified
(questionnaires validated by the ENT Corps), with a score of 88 on the SNOT
22 and severe symptoms specific to Empty Nose Syndrome in the two other
questionnaires .
On July 12, 2017, I
had surgery for a total bilateral ethmoidectomy with bilateral middle concha
tubinectomy, bilateral meatus myotomy, and septoplasty by Dr. M in Chambery
because I suffered from nasal congestion with disturbed sleep.
On the X-rays from October 21, 2016, I was
diagnosed with: "a septal deviation with hypertrophy of the
turbinates" . After the
procedure, I called Dr. M because I could no longer breathe . I had many
problems and severe headaches and presence of scabies which have never gone
away since then. My right nostril was completely blocked, my sleep even
more disturbed and other symptoms appeared. So what was the purpose of
this surgery if not to worsen my condition and breathing problems?
On July 10, 2018, a
year later, not knowing what to do, I consulted a distinguished professor in
Lyon and I trusted him considering his reputation. He performed a septoplasty
follow-up with inferior turbinoplasty (resection of inferior turbinates) despite
the fact that there was a previous ethmoidectomy performed and a previous
turbinectomy of the middle turbinates where these had been removed.
I didn't know about
Empty Nose Syndrome, nor the function of the turbinates. Now after I have
informed myself about the subject, but unfortunately too late. But how is it
possible that a professor of this renown can cut out part of the lower
turbinates when the middle turbinates had previously been amputated without
thinking that this would aggravate the atrophy and degeneration of my nasal
mucosa with the presence of more scabies, ozena and infection because I no
longer had a filter due to the removal of my turbinates? His operative report
notes “a slight dislocation of the inferior turbinate which is then resected
along its entire length. On the right side, a reduction of the right septal
body is made”.
I am attaching this
testimony as an appeal of the September 25, 2018 report by Professor D, “ENT
expert”. The report describes my history, my state of health and the bad
experience with this ENT doctor, who seems to protect his colleagues. The
expert opinion concludes as follows: Since the "consolidation", that
is, as of August 2018, regarding the permanent disability directly linked to
the surgery:
There is no
deterioration of nasal breathing, which during the day is satisfactory, but
which at night is still disturbing and requires the use of pillows to sleep. The
report notes a decline in quality of life , including my daily walk and
spending time with the dogs on weekends. It is stated that there is an
impact on relationships, but nothing is mentioned about sexual aspects . It
also appears that the permanent exceptional injury has caused bad breathing and
frequent sick leave and has forced me to stop my work in the human resources
department, which has negatively affected my salary . This has led to an
occupational impact with a declared loss of income. The report believes
that there is a large emotional component to this disease, related to nasal
congestion whose cause has not been identified (possibly due to overfunctioning
of the parasympathetic system). Although two interventions performed by
highly competent specialists have not improved the condition, psychotherapeutic
treatment is deemed necessary, even if this is not covered by social insurance.
At no point does this ENT expert mention Empty Nose Syndrome, despite the clear tubinectomies and evidence, or can explain the cause of the disabling nasal congestion. The report questions the "iatrogenicity" of my illness and the deterioration of my condition as well as suggesting a previously unstable and depressive psychological state. I have to undergo a third assessment in the next few weeks. Valerie
This
article, written in 2018 by Len Ackland, journalist and son of a World War II
veteran, describes the suffering and fate of his father Jack Ackland as a
victim of Empty Nose Syndrome. The journalist investigates the reasons for his father's suicide, which
occurred after he underwent a turbinectomy (amputation of the turbinates)
performed by an ENT doctor in 1943, followed by a Cadwell-Luc operation.
Jack Ackland wanted to be a fighter pilot but
suffered from barometric sinusitis which caused **forehead pressure, neuralgia
and sinus problems**. Under pressure
from his superior, Jack underwent a turbinectomy. This operation disabled him
and permanently ended his military career . Len Ackland describes the torment his father bravely endured for 18
years, until he took his own life in 1962 at the age of 42 .
The terms "rhinitis atrophique",
"Empty Nose Syndrome", "submucosal resection",
"removal of nasal cartilage and bone", "turbinectomy",
"disability" and "psychological stress" are mentioned.
Although his disability was linked to these operations, he was repeatedly
denied the benefits he was entitled to. 75 years later, what has changed?
Turbinectomy is still performed today.
In
April 2020, Marcio Goulart took his own life after undergoing a turbinectomy
two years earlier, where the ENT doctor had removed almost all of his
turbinates. Marcio Goulart took his life because he could no longer cope with
his **sufferings**; he was born on October 9, 1988 and was only 32 years old. At
the forum for Empty Nose Syndrome Awareness on April 26, 2020 at At 9:29 Mari
Garb wrote: "Hi, I'm coming to inform you that the funeral and ceremony
for our dear friend Marcio is scheduled for 3 pm in the state of Minas Gerais
in Brazil. May we send prayers and much light to him and his fam ilj in this
sad parting time.
Some
excerpts from the article about Jack Ackland:
"In this hospital I was placed under the
care of Major RW Wright, MD, Chief of the ENT Department. I was determined not
to undergo an operation on my sinuses, but after being subjected to
considerable pressure I finally gave my consent to a 'submucosal' surgery which
refers to a submucosal resection that removes the cartilage and bone of the
nose."
"Wright suggested that a set of small
nasal bones called 'turbinates' are often infected and can contribute to ear
problems. During Jack's first operation in March 1943, Wright removed cartilage
and bone from the nose. He then performed a turbinectomy on Jack. Not only was one taken for much of the
structure of the nose was removed, causing the nose to collapse, but also the
ends of the turbinates were removed, causing too much air in the nose due to an
overly enlarged nasal cavity and **atrophic rhinitis** Other doctors have
criticized the operation and assessed the one as 'unnecessary'."
"Major Wilucki and Major Neff in Tucson
made very courteous comments about the work that had been done on my nose and
expressed doubts about my ability to continue flying but said I deserved a
chance to try," Jack recalled in his March 1952 letter. Jack actually
tried and failed."
"The symptoms were the same as before the
hospitalization in Santa Ana and the pain was aggravated by flying. The
symptoms were so severe that the person was unable to fly. Jack was grounded,
downgraded to soldier without 'injury,' and sent to Amarillo Air Force Base for
assignment," he writes in his letter from 1952."
Len
writes, "I now knew the details of his surgery, but I still had one
important unanswered question: Why did Wright, the experienced surgeon, perform
such a radical operation that left my father too disabled to continue his
service? Had he mismanaged surgery according to other
doctors? Were his resections intentional or the fault of an overworked military
surgeon?"
"Although I was unable to determine the
surgical rationale for Wright's treatment of my father, the results of the
surgery are indisputable. I asked Dr. Robert M. Meyers, professor of ENT at the
University of Illinois at Chicago, to review the details of Jack's surgery and
its consequences . Meyers said that surgery in the 40s was 'crudely performed
compared to today.' Today, he said,
Jack's condition would be called 'Empty Nose Syndrome.'
"In November 1946 he was hospitalized for
sinusitis and streptococcal tonsillitis, which caused him 'a specific arthritis
infection and acute joint pain with almost septic temperatures and considerable
swelling in every joint, so much so that his wife did not recognize him. Jack
writes: 'It it was thanks to the care of Dr. Brenann and his colleagues that I
finally survived the crisis, and on Christmas Day my wife was told that she thought
I would live.'"
"After
1946, Jack applied to the VA for an increase in his disability rating, with
more benefits. He and his civilian doctor argued that the chronic bronchitis
caused by the sequelae from the sinuses should be considered along with the
sinusitis disability. In September of the following year, the VA denied his
application .His unsuccessful appeal to the VA included a
letter of support from Dr. Er Fenton of Washington: "Mr. Ackland came to
me on December 31, 1943, and I have been seeing him regularly since. He has
constant drainage from his posterior sinuses and an acute bronchitis with pleurisy."
.He has been carefully examined and there is nothing we have been able to do to
clarify the situation.As a result of these infections, the disability, in my opinion, is permanent and I have recommended his
retirement from official duties he seeks a warm and dry climate to live
in.'"
Jack
writes: "It is often necessary for me to go to bed immediately after work
in order to get to work the next day. Having severe headaches, sore throats,
arthritis attacks, weight loss, general weakness and susceptibility to pneumonia
and similar respiratory ailments are all the result of my
disability."
His
colleagues write: "He often seemed on the verge of collapse when he left
the office to go home or to the hospital for treatment. There
were times when the pain caused him to collapse and Mrs. Ackland had to drive
him home." Jack was hospitalized again in March 1961. This time he was
placed in the isolation ward, which broke his heart as he felt contagious to
his family and friends, causing great **mental stress**. Jack had said he felt
like 'a burden to his family'."
On Father's Day and my brother's sixth
birthday, Dad was too ill to accompany the rest of the family to Elith Gardens
theme park. The next day, at dawn, my mother woke me up and said, "Len,
Len, your father is gone. He didn't come home last night and he has a
gun." It was a .22 caliber pistol bought a year earlier. I jumped out of
bed, dressed quickly, and took the little Pontiac Tempest to look for him. He
had taken our other car. I drove north a few kilometers to our usual shooting
range. Nothing. Then, on my way back, I saw the Buick among the parked cars, a
place where he no doubt expected some stranger to find him. Instead, it was me.
Eleven months after
Dad's death, the VA changed its position. Based on the evidence in the case,
the authority wrote clinically that Jack's pain had had a psychological impact.
It was established that there had been a clear personality change with
behavioral disturbances and psychiatric symptoms on an acquired mental
condition that caused psychological problems. This mental condition was
recognized as directly related to the consequences of sinusitis and bronchitis.
_______________________________________________________________
Testimony
from HD (France) April 18, 2020, Published by SNV
I am twenty-two years old and after a failed
aesthetic rhinoseptoplasty I have suffered for four years from a constant and
disabling nasal obstruction, with impaired sleep. I was eighteen years old when I underwent this operation and had no
breathing problems before. I only had, like most people, a slight septal
deviation which did not affect my breathing and therefore was not a reason for
surgery.
I was young and unaware of the potential risks
of endonasal surgery. I trusted the surgeon's beautiful words and his
experience, and he just said, "We're going to straighten your nasal septum
and remove the bump on your nose, so you'll have a nice nose." This little
bump bothered me aesthetically, so I thought it was a good time to remove it. It's my own fault, I admit it. I would never
have accepted this surgery!
Two
weeks after the procedure, when the cast was removed, hell began! I no longer recognized my nose, which was a
complete failure aesthetically: a sunken bridge of the nose, absence of
cartilage on the right side, the tip of the nose being raised too high and the
nose swollen. A month of trauma after this terrible operation! Mentally, it was very difficult: I even
considered ending everything - studies, sports, relationships, family life... In
desperation, I made an appointment with Dr. OG, a
well-known plastic surgeon in Vincennes, who injected hyaluronic acid into the
alar cartilage to fill in the sunken bridge of the nose. (The effects of the
product last between twelve and fourteen months). At the moment, I am relieved,
at least on the aesthetic level, because I have regained my former appearance,
which has allowed me to continue my studies and my life...
But I have a constantly blocked nostril and
therefore use a German nasal spray, a powerful decongestant that opens the
nostril in five seconds (the dose is equivalent to
Derinox). I therefore made an appointment with an ENT doctor for my remaining
obstruction problem, Dr. FG, who first prescribed weaker sprays than the
"German Derinox," but which were less effective and whose
decongestant effect lasted a shorter time compared to the German Derinox, which
lasts for several hours.
At the second visit, when the sprays proved
ineffective, the ENT doctor suggested a radiofrequency turbinoplasty to reduce
my lower turbinates. I agreed and we
would schedule a surgery day immediately after a scan, but due to covid-19
related restrictions it is currently impossible to carry out a scan or schedule
surgery - non-vital procedures and investigations are currently postponed . I
was lucky and thankfully I came across your website, which is filled with
testimonials about this horrific procedure being performed on the turbinates,
which made me realize the potentially serious and irreversible risks of this
surgery. I then called the ENT doctor and said that I was scared and no longer
wanted to carry out the operation. He replied that: "this operation was
not an ancient method, that I had nothing to worry about.
A piece of advice for those who are considering
a rhinoplasty for aesthetic reasons and who do not have breathing problems: be
informed, do not play with your health - it is more important than aesthetics.
Accept yourselves as you are. Do not be seduced or deceived by the words of
some incompetent and unscrupulous surgeons. Mistakes are human: a wrong decision can lead to consequences with
serious and disabling consequences in our daily life, as it was for me: a
constantly blocked nose, difficult nights of non-recovery sleep, and an
aesthetically mutilated nose in need of hyaluronic acid injections were twelfth
to fourteenth month if I want to continue living. HD
________________________________________________________
Testimonial
from Pierre F (France) April
6, 2020, Published by SNV
My name is Pierre F, a 21-year-old student, and I, like many of you here, have had a disabling sinus surgery.
**May 2019:**
Last May I got sick with a severe sinus infection. I consulted an ENT doctor in Créteil, who, after prescribing several different antibiotics: Augmentin, Pyostacine, Flagyl (she had found anaerobic bacteria through a nose test), decided to operate on me.
**September–November 2019:**
On September 4th, I had a bilateral meatusotomy
extended to the anterior ethmoid sinus and a septoplasty with resection of a
bony ridge on the left side that was preventing my left sinus from breathing,
as well as removal of the head of my middle turbinates. The record does not specifically mention "Turbinectomy", but
the resection of my middle turbinates is mentioned. I want to point out that
the ENT doctor never talked to me about my turbinates, not even cutting them
out before surgery, and he only mentioned meatusotomy and septoplasty.
According to the ENT doctor, the operation went well, but only two weeks later I developed a fever, a general malaise, and very persistent discharge. I urgently visited a laboratory which, through a sample from the left nasal cavity, found that I had Staphylococcus aureus. Results: ten days with Pyostacine. I again consulted the ENT doctor who assured me that I was healthy despite the presence of nasal crusts which were likely to disappear. Confidently I also believed this. But barely fifteen days later, my condition worsened again.
**December 2019:**
I visited a new ENT doctor: Dr. See de C. at the American Hospital in Paris. He took a sample from my left nostril and again found Staphylococcus aureus, which led to a month of treatment with Pyostacine and a month and a half with Mucopirine: an antibacterial ointment to apply to the nose. After a slight improvement a month ago, I have now become infected again.
Every day I have continuous discomfort and a burning sensation in my left nostril, I can't breathe properly with it, and above all I have a pain that I would rate as 5 out of 10 or even 6 out of 10 on the left side, which always being reminded, as well as a feeling that I constantly have an ongoing infection. I also often have pain in the right frontal sinus. Finally, my condition worsens more and more: difficult nights, chronic fatigue and this despite my good will. I try to go outside and get some fresh air so I don't get depressed, but my body says stop Pierre F.
_______________________________________________________
Testimony
of Hugo I. (France) March
25, 2020, Published by SNV
18 years ago I received a severe blow to the
nose which caused a deviation in my nasal septum. My nose was really crooked,
but I lived with it all this time. Because I was breathing poorly through one
nostril due to the deviation, I decided
to have surgery, believing it would improve my quality of life (better sleep,
less snoring and a feeling of energy when I wake up) . My girlfriend at the
time strongly encouraged me to do it, and I had money saved from an inheritance
from my father. I decided to take the plunge.
June 2019:
I consulted Dr. LX in Neuilly-sur-Seine. He had
a good reputation on Google, and I didn't look much further. We did two
simulations, and I chose the one that changed the appearance the most (removal
of the hump and a slight reduction of the nose). I have to admit that I was
influenced by my girlfriend to choose the most life changing procedure...
Afterwards, I had a CT scan of my face and
sinuses, and it was discovered that I had a polyp in my right maxillary sinus
and a deviated septum that caused a blockage. The surgeon said confidently:
"With me you will breathe. I will ventilate your sinuses and use some
laser..." Very naively I did not ask for more information about all this,
because I believed that my doctor was a recognized expert and knew what he was
going to do... It was a big mistake! But would I have refused the procedure
even if I knew what he was going to do? Probably not, as I had confidence in
the medicine at the time. Therefore, I also did not consult any other
specialists (another big mistake).
31/01/2020:
I went into the operating room. Recovery went well until he removed the
cast after 10 days. And there... the horror began. The problems began to come
in a cascade. What struck me first was the aesthetic result. An absurd nose,
much changed. I had a Vincent Cassel nose and now I had a boxer nose, flat
and shapeless. But that wasn't the
worst. I would soon discover what was really wrong.
It was at that point that I asked the surgeon
to explain what procedures he had done so that I could understand and accept my
new body. He then looked at me with a condescending and very surprised look
that I asked this question, and simply handed me the operation report without a
word.
When I got home, I rolled up my sleeves and
deciphered these terms that I now know by heart: Rhinoseptoplasty, Triangular
Cartilage Dissection, Alar Cartilage Dissection, Cartilage Resection, Bilateral
Flexible Fiber Laser Rhinoplasty, Inward Dislocation of Inferior Nasal Concha,
Bilateral meatusotomy of the maxillary sinuses, removal of a polyp... So many
scary words that I bitterly regret having entered my life.
Very quickly I began to feel that my left
nostril (the one that was initially blocked) was way too open and an excessive
amount of air was coming in with a constant feeling of cold and a burning pain.
This was accompanied by a feeling that the eye would start
to water (a feeling that has diminished today). I started waking up 30 times
a night, even though I used to sleep very deeply; got dark circles under my
eyes, felt suffocated by rising anxiety, and had difficulty breathing in
naturally and unconsciously.
In my right nostril, which was initially
healthy, a minimal amount of air flowed in on inhalation (about 10% of the
normal volume). I later discovered that I had a collapsed nasal arch caused by
an excessive resection of the lateral cartilage. As a result, I have less of
the cold air feeling in this nostril.
I then
had a follow-up x-ray which showed that my lower turbinates had been reduced by
laser. I don't know exactly how much. One ENT doctor
said it was 50% eye gauge, another said it was just the head of the left concha
that had been cut off, about as much as a phalanx... Also, I now have a
widespread infection in both sinuses that are completely blocked.
On day 26:
Around 3am I had three bleeds, the last of
which was impossible to stop. It was the fire department that took me to the
hospital, where I went through pure hell. I had swallowed so much blood that I
threw up, and I finally passed out and fell to the floor because I was so weak.
(I would like to point out that this has never happened to me before, I am a 34
year old male, athletic and working in the security industry). They then
urgently burned my vessels, almost without anesthesia, with a probably electric
endoscope. And this on the left nostril which had been most reduced.
Afterwards I started experiencing all the
symptoms of Empty Nose Syndrome, such as the smell of infection coming out of
my nostrils (something that is subdued at the moment as I am on antibiotics,
doing regular rinses and plugging my nasal cavity with wax), migraines,
difficulty sleeping , depression, suicidal thoughts that even led me to spend
two days in a psychiatric clinic… It is as if I had hit rock bottom, when all I hoped for was to be able
to breathe properly!
Now I
live with part of my brain constantly occupied with this feeling of cold air on
one side and blockage on the other. I sleep with my
head in my sleeping bag and force myself to breathe through my mouth. I place a piece of natural wax to dampen
the ferocity of the air that comes and erodes my nasal lining, but it doesn't
really work 100% well.
I'm trying to stay positive, but my girlfriend left me during this ordeal, I'm trying to exercise, go to work (after a month and a half sick leave), but it's hard. I don't know if I will ever get a normal life back. I would like to hear your reactions to my experience and if I still have a chance to recover. Looks like I still have some lower turbinates left. I am not like some who are completely mutilated. But even now the symptoms are very difficult to live with. / Hugo I
___________________________________________________________________
TESTIMONY
LAURENCE H (France) 20
March 2020
I am attaching herewith the contributions for
my son Sven, 25 years old, and for myself. Sven
underwent surgery on 23 February 2006 in Brest, where he underwent a
turbinectomy . At the time, he was under the care of his grandparents. It
was his grandmother who took the initiative to relieve his constantly stuffy
nose. I was in the middle of a burnout, I was faced with fait accompli and
didn't realize the extent of the damage! Today
I bitterly regret that I silently "agreed" to this mutilation of
Sven.
He endures immense pain, especially since after
the RoR vaccination he is now autistic with Asperger's. A
double burden for a young man of 25 years, highly intelligent and
hypersensitive.
On your advice I have requested the surgery report. Thank you so much for your outstanding work and dedication. You are truly a light and a hope for us. Thanks again. We wish you a lot of strength to pass your health trials, we support you in our thoughts and send all our love. / Kind regards, Laurence, Sven
NB:
Sven was 11 years old when he underwent this endonasal surgery in 2006
(asthmatic and severely allergic at the time of the event). On the three SNV questions, he scored a
total of 92 points on the SNOT 22 and responded positively with severe degrees
to the six items of the ENS6Q and ENS6Q modified, with severe
paradoxical nasal obstruction, thick nasal discharge, postnasal secretions,
pressure and pain in the ears, blocked ears, cough, sore throat, dizziness,
disturbed and non-restorative sleep, multiple awakenings, chronic fatigue,
disturbances in taste and smell, lack of air, feeling of suffocation, lost
productivity and concentration, irritability, frustration, withdrawal,
anxiety... I'm attaching part of his email from 03/25/2020 which
complements his symptoms...
My troubles depend on the surroundings. In the
Paris region, I am affected differently, depending on the humidity and air
quality. I suffer tremendously from this situation, I am very sensitive to
environmental pollutants, pesticides, boron salts, combustion particles (gas stove with propane...). We bought a Dyson Pur
and Cool air purifier, and I notice that every night there is an increase in
VOCs (volatile organic compounds), after much research it turns out that it is
the boric salts in the cellulose insulation that breaks down in the pitched
roof and atmosphere; indoor air is found to be more polluted than outdoor air.
When I wake up I'm extremely tired , I think the boric salts' downsides are added to
my worsening Empty Nose Syndrome , aggravated by my Asperger's Syndrome. In
other places I don't have the same discomfort and am much less tired when I
wake up. Boron salts are neurotoxic and reprotoxic. In this house, since 2010,
I blow my nose constantly, at least 15 times a day, my nose is constantly
blocked and my nasal membranes are always moist due to the prevailing humidity.
As soon as my body is exposed to neurotoxic chemicals, I react very
strongly, unlike a healthy person who has their turbinates, especially from a
neurological perspective and paradoxical obstruction" .
________________________________________________________
Testimonial
from Christine P. (France) January
7, 2020, Written by SNV
Dear Françoise: To remedy a recurring nasal
obstruction, a general practitioner had prescribed Déturgylone and Aturgyl for
me. After some time he advised me to see an ENT specialist, as nasal spray
vasoconstrictors are dangerous. So I followed his advice.
I made an appointment with Dr. G., an ENT
specialist at St Musse Hospital in Toulon. I had an old scan with me that was
two years old. He said straight away that I needed surgery, that my nose would
never be free again, and that it was a minor, routine procedure... (I have
other rather serious health problems as noted in the consultation report from
Professor C that I sent you). After a short discussion to build trust (on his
part) I accepted the surgery thinking: "he's a specialist, he knows what
he's doing". I had of course informed him of my other health problems and
that I already had enough suffering without him adding more…
Septoplasty, meatotomy, bilateral lower
turbinoplasty (29/06/2017)
I had
surgery on June 29, 2017 and a month later the following symptoms began to
appear: coughs, infections, discomfort and loss of
taste that I never regained since this surgery . My general practitioner,
Dr. M., an amazing woman, tried to get hold of the ENT specialist, but she
never managed to reach him, his secretary blocked all attempts. It took me
three months to finally get an appointment.
He
practically threw me out of his office and said that "his operation had gone well, that he made not just a road but a
highway" . When I mentioned that I had lost my sense of taste, he replied that "it was the first time in his career
that he had heard anything so absurd (among other things) and that it really
was a crazy story!"
I have
symptoms similar to those affected by Empty Nose Syndrome, such as headaches, dry nose and eyes, burning nose
and facial pain, cough, tinnitus, inability to blow my nose, and the need to
rinse my nose with my head down because the mucus is blocked , etc.
The
operative report from this ENT specialist is incorrect, it states that he
removed "40% of each turbinate", which is already objectionable as it
is known that one should not remove more than 20% of the turbinate. Also,
this ENT specialist performed a meatotomy that was not planned, and he offered
me no medical treatment before the surgery. After this surgery I got staph
infections, with permanent scabs...
I finally think that my problem from the
beginning was simply allergic, since it corresponds to an environmental change,
I moved to the country where there is a lot of pollen, etc.
In any case, I am happy and surprised to know
that you are there and I feel less alone. No
one knows what turbinates are, or what a turbinectomy means. Even those closest
to me do not care about this, because it is not visible.
I am
68 years old and I know I won't live another 20 years, thank God, but I hope
there will be solutions for the younger ones. I just
wish that these nose jobs are banned, and that those responsible are forced to
pay damages.
Thank you for all your efforts, I will do what I can based on my condition. I know my letter is too long, but it is still too short compared to the suffering these ENT specialists have caused. / Sincerely, Christine P.
____________________________________________________________
Alice's
testimony (France) 5
October 2019
Ethmoïdectomie bilaterale, méatototomie moyenne
et inférieure bilaterale, turbinectomie moyenne radicale bilaterale and
probably left upper turbinate, turbinoplastie inférieure bilaterale,
septoplasty (2013)
Six years ago I sought an ENT specialist
because of recurring rhino-pharyngitis and headaches. (The ENT specialist I
consulted as needed in the past and my GP had found no effective treatment to
stop these symptoms). After a quick examination, this ENT specialist diagnosed
me with a nasal obstruction and a deviated septum , which my previous
ENT specialist had never pointed out. He ordered an X-ray which showed that
there was a submucous cyst at the base of the left maxillary sinus, a
left-sided septal defect that was obstructive on the anterior part of the
middle turbinate, and that there were no other abnormalities .
After reading the x-rays, the ENT specialist
immediately prescribed an operation (septoplasty with sinus drainage) without
offering any less invasive medical treatment. He also did not mention any
potentially serious side effects or risks, or that he would be operating on the
middle and lower turbinates, something I discovered only after receiving the
operative protocol which stated: "Bilateral ethmoïdectomie with
septoplasty, bilateral meatotomy" as well as "an excision of
the heads of the middle turbinates on both sides and a bilateral turbinoplasty
of the lower turbinates with coagulation" .
After the operation, I quickly developed a
dry nose . The ENT specialist then prescribed nasal baths with
physiological saline to be administered with a syringe and Balsamorhinol. After
this treatment, purulent scabs appeared with a foul smell , a sign of
secondary atrophy with ozena, i.e. Empty Nose Syndrome due to atrophy
and degeneration of the nasal mucosa and nasal edges as a result of complete
removal of the middle turbinates and turbinoplasty of the lower turbinates **.
Since this operation I have had these scabs
constantly, and in addition I suffer from regular infections which lead to more
and more frequent sinus infections. It is not always easy to remove the
purulent scabs, even after rinsing the nasal cavities, because they tend to
settle over time.
I have seen the ENT specialist several times
regarding this. Each time he replied that it could take a long time to heal,
and I was given the same prescription: nasal irrigation with physiological
saline, drops of Balsamorhinol to put in the nose, Zinnat 500 (an antibiotic to
be taken for ten days for sinusitis) along with Rhinomaxil ( a corticosteroid) .
For the problems with the purulent scabs, he
suggested a new operation: insertion of acrylic rods , which I
fortunately declined because I have just learned that several victims of Empty
Nose Syndrome who underwent this operation have had these non-autologous
implants rejected and had to undergo further surgical procedures surgery to
remove the rods.
2019:
On the new x-ray prescribed by the ENT specialist, it says: "Indication:
Recurrent sinusitis. Previous sinus surgery in 2013. Previously performed
méatotomy bilateral, middle turbinectomy bilaterally and probably upper
turbinectomy left" . These procedures were never prescribed in the
first place! Only septoplasty was on the protocol.
Currently, I have no neuropathic, sinus
inflammatory, or facial pain, no paradoxical nasal congestion, or frontal and
frontal sinus sequelae. I can often cheat, but recently I've been getting stomach
aches more and more often and I'm getting less and less able to tolerate
certain foods that I used to have no problems with. It could be that the
postnasal secretions that I swallow cause gastroesophageal reflux, with
sourness in the mouth, diarrhea, bloating, and painful cramps .
When the sinusitis heals, I feel better, but it's an endless cycle that returns relentlessly. This 2013 surgery has been to no avail. Not only do my previous symptoms persist (recurring headaches and rhino-pharyngitis), but it has also worsened my health by causing other problems. This mutilating operation should never have been carried out. Three other people have fallen victim to this surgeon… Alice
___________________________________________________________
In memory of Marc Bidaux, victim of Empty Nose Syndrome. Died by suicide on January 23, 2021 (France)
I am 42 years old,
have a family with two children and live in Finistère. My testimony is
unfortunately similar to many other victims of Empty Nose Syndrome and is a sad
story.
About eight or ten
years ago, I suffered constantly from nasal congestion. At that time, I was
prescribed many nasal sprays, such as Dérinox and "Destop" for the
mucous membrane, which were never intended for long-term use.
Conclusion: we did
not address the cause of this obstruction, which was a stuffy nose due to allergies,
and my condition has only gotten worse.
June 2015 (First operation: bilateral lower
partial turbinectomy)
Tired of the constant
stuffy nose, I consulted several ENT specialists to find a sustainable
solution. After two or three meetings, I met an ENT specialist at the
University Hospital in Brest who seemed competent, serious and above all open
to dialogue about the risks of ENT treatments.
She reassured me and suggested a minimal
turbinectomy, with a small incision of a few millimeters in the turbinates, which she showed me on a drawing that I still have.
Despite my concern about potential risks, I asked if a turbinoplasty would be
preferable. She advised me against it, as she considered it an unnecessary
operation and stated that I would have to do it again in two or three years.
After considering and being reassured by the minor procedure, I agreed to the
operation, which according to her went well. After a few weeks I noticed that I
was breathing better, especially on the right side.
January 2016 (Second surgery: near total lower
turbinectomy):
At the follow-up
visit, I told the ENT specialist that I was breathing well on the right side
but that the left side was still blocked. We decided to perform a small
additional partial turbinectomy on the left side. For me it was about cutting a
little more, but not removing everything that was shown on the ENT specialist's
drawings. After surgery, my left nostril seemed to be less blocked. I was still
a little embarrassed though, but nothing more. I was breathing better than
before, so I thought everything was perfect.
March 2019:
Suddenly and without
warning, my nose became completely blocked for a month and a half. I had
completely forgotten about my fear of Empty Nose Syndrome and didn't think
about it at all. The treatment (corticosteroids, cortisone, spray) really made
my nasal congestion worse. I had to stop it after three days. Severe pain
arose, as if my nose was on fire, and I felt that it was too open, with too
much unfiltered, unheated air.
Since then it has been hell. My nose is
sometimes blocked, sometimes too open with painful breathing, burning in the
nose and nasopharynx, facial pain and intense fatigue. The worst is the
dyspnoea which means that I can no longer sleep without medication. Without
medicine I suffocate as if I could not breathe "automatically"
(nocturnal asphyxia).
In addition to the physical suffering, anxiety
and depression are inevitable. How
can I live and take on my role as a father and my job in this condition? At
work I have a hard time, no nap is possible. I can no longer sleep without
medication, no restful sleep. How will I cope over time with this disease that
seems to be degenerative?
No treatment either;
I have consulted ENT specialists and several colleagues of the person who
operated on me. They told me, I quote: "I'm not going to invent a disease
for you, you don't have one. Fortunately, there are others who are
competent." According to them, it's honestly Empty Nose Syndrome, which
was confirmed by a CT scan that showed 90% of my lower turbinates had been
removed.
Since 2015, ENT
specialists have noted degeneration and progressive atrophy of my mucosa due to
the nasal cavities being too open. However, they had no solution or restorative
surgery to offer me. Any operations are rare and offer no guarantee of success,
such as implants.
I met a famous
professor in Italy (Fabio Piazza) who told me: "You were operated on by a
very young ENT specialist with no experience." He didn't want to operate
on me because it's too risky and advised me to wait a bit and observe the
progress of my mucosa before contacting him again. Soon I have an appointment
in Nice with a famous professor, known for his cartilage implants. I await his
diagnosis.
Today I live as best I can, but I have lost a lot of my energy and zest for life. I suffer day after day from the symptoms of this iatrogenic disease . I try to continue to do some sports and enjoy my children as much as I can. Despite my stated fear of complications and the risk of Empty Nose Syndrome, my ENT specialist performed the procedures and removed all my turbinates, perhaps just to perform an experiment. No doubt I was just a test subject and had to face the consequences…Marc B.
__________________________________________________________
Testimony
of Armine K (Belgium) 3
September 2019
July 2018 (Rhinoseptoplasty, bilateral lower
turbinectomy):
I went to Armenia to
undergo a rhinoseptoplasty because this surgery was cheaper there, and I had
seen similar surgeries performed by experienced surgeons. Finally we found a
surgeon. I asked him many questions during the consultation about my nose and
possible procedures, and he always replied, "It won't be a problem!"
I even warned him that I had a "complicated" nose and that I would
forgo the operation if he had the slightest doubt. This surgeon never mentioned
touching my turbinates, but that's exactly what he did. He did not inform
me of any secondary risks. He lied to me from the beginning... I trusted him.
Immediately after the operation, I felt that
something was wrong. When the tampons were removed, hell began! I said that I
wasn't breathing normally, that I couldn't feel the air and that my nose felt
"stuck in a vise!" He
told me to be patient and that everything would gradually get better. Just
before I went home, I saw him again for a follow-up because I still couldn't
breathe. When I returned to Belgium, I consulted an ENT specialist who
diagnosed me with paradoxical nasal obstruction. When I asked what that
meant, she said that "my mucous membrane after the operation had lost its
sensitivity."
While researching the internet, I came across
information about Empty Nose Syndrome. When I read about the symptoms, I
understood what I was suffering from! I was shocked. In a panic, I called my surgeon and
told him I had Empty Nose Syndrome, that I couldn't feel air and that I had
tachycardia. He said, "Don't worry, no, you don't feel the air now, it's a
nerve in the mucous membrane. In the winter you'll feel better, you'll recover,
you'll see."
September/November 2018:
I wrote to him that I
was sick and that he needed to help me, but he always read my messages and did
not respond. Since then I have consulted many surgeons and ENT specialists, all
of whom have told me that my turbinates had been resected.
September 2019:
Over a year later, I still feel bad; I suffer
from suffocation, insomnia and anxiety. Here in Europe I have been advised not to touch my
nose and have been advised against any type of surgery, even though my surgeon
still wanted to reduce my turbinates and denies his mistake!
This ENT specialist ruined my life. I am only
34 years old. I had no health or sleep problems before this surgery, but now I
am disabled and unable to work. How
can you work when you're suffocating and can't sleep? How do you live a normal
life? If I had been warned of the potential risks, I would never have agreed to
this surgery. Before, I played sports and used to go for long walks. I
lived like ordinary people. But now my life is hell; I take antidepressants
(clomipramine) and am completely exhausted to cope with... There is a
"before" and an "after" operation.
I have several medical reports confirming that
this 2018 turbinectomy is responsible for my diagnosed Empty Nose Syndrome. My
surgeon finally admitted that he had reduced my lower turbinates. When I asked him why, I got no answer. He just said
I wasn't the first or the last…
I get some relief from my symptoms by using a humidifier. I had a sleep test that showed continuous awakenings, apneas, and non-restorative sleep , so I was put on a CPAP (continuous positive airway pressure ventilation). I have spent a lot of money trying to relieve my symptoms, but no medicine helps, except for the benzodiazepine alprazolam, which however has harmful side effects (addiction). I have tried to commit suicide three times in the last few months because I can't stand these symptoms anymore. I feel completely lost. Armin K.
________________________________________________________
Testimony
of Betty C. September
3, 2019, ( syndromedunezvid
e)
March 2019: After
a disastrous extraction of my left cheek tooth, where the wall of the sinus
floor was damaged, I suffered a sinus infection, despite this I was not
prescribed antibiotics in time. It was treated with antibiotics too late, which
allowed the inflammation to continue. I consulted an ENT intern at the hospital
in my town, who told me not to do anything and offered me no treatment.
June 2019 (Middle and lower meatotomy):
I then saw an ENT doctor who suggested a middle
meatotomy to relieve my pain. (A meatotomy is an operation that involves
widening the opening to the sinuses in the nose)
He would remove an inflammatory submucosal cyst
as well as a piece of the tooth root that remained in the gums. I accepted the
operation, which the doctor said was risk-free. In addition to the middle
meatotomy, the doctor also performed a lower meatotomy, but he did not remove
the cyst!
Since then I have been through hell:
endonasal burning, painful dry nose, jaw pain and above all total insomnia . I
thought I was going crazy after many nights without any sleep. As soon as I try
to fall asleep, I get a kind of sick feeling that constantly wakes me up. Now I take sleeping pills that allow me to
sleep about five hours a night, and I take painkillers (Laroxyl and
Gabapentin). I also constantly use a
damp cotton ball, sometimes with menthol, in my nose which gives me some
relief.
This operation has worsened my state of health
and has affected my professional life: I have to reduce my working hours
because I cannot concentrate with all these medications and this lack of sleep.
I am always extremely tired.
My doctor talks about Empty Nose Syndrome, but the other specialists I've talked to don't know about this disease. My life has become a trial, and it is hard for me to endure… Betty C
____________________________________________________________
Testimony
of Muriel B. (France) 29
August 2019
I had to consult an ear, nose and throat doctor
(ENT doctor) at the Teinturier clinic in Toulouse because I had inhaled a toxic
substance at work. Because of this, I suffered from hypertrophy of the lower
and middle turbinates, as well as a nasal obstruction that prevented me from
breathing.
I explained my poisoning to this ENT doctor,
but he did not take it into account and denied the facts, despite the fact that
this poisoning with chemical sensitivity has been recognized as an occupational
disease and that I have been on sick leave because of this since 2013. The ENT doctor diagnosed diagnosed me with
chronic sinusitis due to a deviated septum and hypertrophy of the turbinates,
and said I therefore needed surgery.
I then expressed my concerns about developing Empty Nose Syndrome , as I had read
about this disease. The ENT doctor clearly replied that the people who talked
about Empty Nose Syndrome had a
"special profile". I verbally asked him not to touch my nostrils. He
replied that he would not do that, but that he would operate on me so that I
would be able to breathe very well... I therefore agreed to the operation.
February 2019 (Septoplasty, valveplasty,
bilateral turbinoplasty of the lower turbinates, bilateral opening of the
ethmoid sinus.
Since this operation, my condition has worsened,
especially the headache, earache and dry nose. My sleep is no longer
restorative, I suffer from insomnia or sleep very little, and I constantly wake
up with this horrible and anxious feeling of not being able to breathe. I'm
always tired. Psychological and professional consequences too: I have become
anxious and have panic attacks (fear of going out, fear of crowds). I feel
crippled and unable to return to my professional life.
An unnecessary operation that I would have liked to have done without! Another surgeon who claims to be an expert but does not know the function of the turbinates. Another ENT doctor with a light hand on the scalpel and interested in profit, given the procedures performed in one operation...Muriel B.
___________________________________________________________
Mélanie
B testimony (France) 24
August 2019, Syndromedunezvide
I had suffered from
chronic sinus infections for six years. After trying various treatments to no
avail, my ENT doctor suggested I undergo surgery. He briefly explained that he
would straighten the nasal septum and open the sinus so that I could breathe
better. In May last year I therefore underwent a septoplasty and an
ethmoidectomy. I did not know at the time that this ENT doctor had at the same
time performed a radical resection of the middle turbinates without informing
me.
Since the operation, my condition has worsened.
I have excruciating headaches that make me want to throw up. I often have a lot
of pain in my sinuses. I either feel like I'm getting too much air or not
enough, plus I have mucus running down my throat. I can't even sleep flat
anymore and my sleep quality has deteriorated significantly, sometimes I wake
up because of the phlegm or because I have too much of a headache!
I have gone back to
my ENT doctor three times, but he just repeated that the surgery was well done
and that I needed to rinse my nose properly! He was unhelpful and did not
understand my condition at all. I felt crazy and was in great mental
distress, as regular painkillers were not helping me. I then consulted my
GP, who thought the situation was abnormal, but as he was not an ENT
specialist, all he could do was prescribe stronger painkillers.
I started searching
for a new ENT doctor and came across Syndromedunezvide.com. website of the
association Empty Nose Syndrome france. There I got a shock! After a
conversation with the president of the association, I asked my ENT doctor for
the surgery report, and that's how I learned that I had also had a resection of
the turbinates! My ENT had never mentioned that he was going to remove a
concha, and I was shocked and really furious when I found out!
My everyday life is completely turned upside
down, I can no longer do 'normal' activities, I can't work properly because of
the headaches, I have withdrawn and feel tired and depressed.
August 2019:
I had a follow-up CT
scan of the sinuses which confirmed the total resection of the turbinate, and
the doctor commented, I quote, "The ENT doctor has done a
highway," and that I no longer have sinusitis. The ENT doctor had thus, in
addition to the ethmoidectomy and septoplasty, performed a radical of the
turbinates without my consent and without informing me in advance. Now I
understand better why I have developed the symptoms of Empty Nose Syndrome .
I have not received any other information from him.
My GP wants me to
have an MRI scan. It's complicated right now, I have a feeling that people
and doctors I see think I'm crazy... I'm going to see Dr. B. soon, hoping
it will get better... But I won't let go this ENT doctor who has mutilated my
nose. He has some explaining to do to me, although he doesn't seem to see any
problems. / Melanie B.
________________________________________________________
Testimony
of Christophe S. (France) 24 May 2019
I have suffered from
nasal congestion (hypertrophic rhinitis) for ten years now, despite several
endonasal surgeries and operations on my turbinates . I have since
consulted several ENT doctors in Paris, including Dr. B., who recently
suggested a seventh operation on my turbinates on the grounds that the effects
of the radiofrequency treatment done in 2012 are wearing off with time.
2010 / 2013: Laser treatment, Septoplasty,
(surgery of the nasal septum) meatus surgery [**1] ,
(surgery of the sinuses) surgery of the turbinates with radio frequency:
The first laser
treatment was done by Dr. K. without results. Then I consulted Dr. BL., who
after trying all possible treatments, including allergy tests, performed a
second laser treatment which was ineffective on the left side. He then
suggested a partial resection of the lower turbinates, which I declined at the
last moment. Because Dr. BL. no longer wanting to operate on me, he referred me
to Dr. L., who performed three surgical procedures at once:
- Septoplasty
to straighten my slightly deviated nasal septum.
- Meatus
surgery to lift the middle turbinate and open the middle nasal opening and
remove a polyp.
- Turbinoplasty
of the inferior turbinates with radiofrequency.
Results: Three surgeries that were unnecessary,
with no improvement in my symptoms.
2014: Turbinoplasty of the two parts of the
inferior turbinates:
I am consulting a new ENT doctor, and after
several ineffective treatments, Dr. F. suggested a turbinoplasty of the two parts
of the lower turbinates, which I accepted in desperation, but again this time
without results. He referred me
to Professor H. at the Lariboisière Hospital, who is against all interventions
and for good reason...
Dr. B. prescribed me
Rhinomaxil (corticosteroids) which actually helps me sleep better, but I am
afraid that this treatment may worsen my condition. When in doubt, I only use
it in exceptional cases. Your advice is valuable to me; I already apply some of
them: nasal rinses before bed, open windows at night for ventilation, which
helps me breathe better, and humidification of living spaces. I am also
considering trying new methods, such as engaging in physical activity,
elevating the head of the bed, or completing a spa treatment.
As for the surveys
you mention, I have already completed them:
The rhinomanometry at
the Henri Mondor Hospital showed "a nasal obstruction with suspicion of
vasomotor rhinitis and collapse phenomenon in the supine position on the left
side at the valve". The polysomnographer detected sleep apneas that
warranted CPAP, a treatment I abandoned because I couldn't breathe with it.
These interventions have worsened my health
condition. Before these operations, I only had a blocked nose, which bothered
me, but did not affect my quality of life very much. Now my symptoms are a real
obstacle: breathing difficulties, headaches and constant fatigue because I
sleep poorly. These symptoms make me miserable. I suffer from depression and
find it difficult to continue working, and of course I no longer have an
emotional life.
Despite my symptoms
and the tests done for Empty Nose Syndrome, none of these ENT doctors have
mentioned Empty Nose Syndrome as a result of these irreversible and unnecessary
procedures on my lower turbinates...
Christopher S.
________________________________________________________
Testimony
of Emmanuel R. (France) 19 May 2019
Hello everyone, My
name is Emmanuel and I am 43 years old. I underwent endonasal surgery in 2001
to correct a deviated nasal septum . I had a recurring sore throat and
mucus in the back of my throat. A severe hypertrophy of the middle and lower
turbinates and a deviation in the nasal septum were diagnosed, which, according
to the ENT doctor, required surgery.
I will always remember the doctor's statement:
"We have to operate!" I
now regret agreeing to it. I want to point out that I didn't get a written
report or surgery description, so I don't know exactly what was done:
septoplasty and probably turbinoplasty since the ENT mentioned he was going to
work on my turbinates.
Second operation: Removal of tonsils:
After this operation my condition did not
improve; I complained of a
runny nose, which was bothersome but bearable. My recurring sore throats
continued. The ENT doctor was not in favor of an operation on the tonsils.
Unable to take these tonsillitis and antibiotic treatments any longer, I turned
to another ENT doctor who quickly recommended removal of the tonsils. This
operation was a torture, so painful it was terrible.
Third operation: Insertion of septal plug for nasal septum
perforation:
Mucus in the back of
the throat continued and was often triggered by vomiting in the morning. I also
had a burning sensation in my nose and consulted a third ENT doctor who
informed me that these mucus plugs were normal, but that I had a perforation of
the nasal septum which would be the cause of the dry nose. He inserted a
silicone septal plug, which became so uncomfortable and painful that I finally
removed it and developed a severe ear infection that left me with regular
tinnitus-like noises in my left ear.
At the same time, I
started having stomach problems with the daily bloating . I blamed the
repeated use of antibiotics and antacids (proton pump inhibitors) prescribed. In
general, I did pretty well except for the dry nose which was annoying and
resulted in me scratching my nose a lot.
In 2013, I started experiencing nighttime awakenings
due to a new, indescribable and bothersome sensation of too much air coming in
through the nose. This
discomfort, in the right nostril and in the frontal sinus, was aggravated with
severe headaches radiating to the right side of the head. These headaches
became weekly and were usually relieved with aspirin, but I was constantly
tired. At the time I did not understand the connection to this surgery. When
I was working out, I felt like I was having trouble breathing through my nose
and quickly turned red like a crab.
I consulted a fourth
ENT doctor, known for "fixing boxers' broken noses". After an
endoscopic examination, he discovered a staphylococcal infection and judged
that repair of the nasal septal perforation would be ineffective. He only gave
me a nasal hygiene treatment: rinsing the nasal passages several times a day
with physiological saline and supplementing with Gélositin oil to limit the
dry nose.
This ENT doctor
personally knew the surgeon who operated on me and did not believe that
operation by his colleague was responsible for my symptoms, (which were not
present before those operations). This is why I quickly abandoned this
treatment.
Since the headache
did not go away, I consulted a fifth ENT doctor in Créteil who recommended an
x-ray of the sinuses. Results: nothing remarkable. Diagnosis: facial pain. He
recommended that I see a neurologist.
In a crisis, I went
to the headache emergency room at the Lariboisière hospital where I did an MRI
and was diagnosed with a migraine. Attempts at triptans were ineffective and I
was asked to keep a food diary to identify trigger foods. I soon gave up
because I didn't recognize the typical migraine symptoms.
But when I researched online, I discovered
Empty Nose Syndrome which felt more relevant to me. As I read on, without becoming a hypochondriac,
I realized the role of the nose, breathing, and diaphragm and quickly linked my
symptoms (headaches, dry nose and throat, bloating, etc.) to Empty Nose
Syndrome. Now I hope to find a doctor who can help me. I have become
suspicious and now tend to believe that ENT doctors are out to harm. I am now
skeptical of any surgical suggestion.
Because I am deaf, the doctors insist that I get a cochlear implant. In researching this, I find that there are no real evaluations or reports on these implants and no compilation of failures or complications. On the contrary, everything always seems to be embedded in success… Emmanuel R.
___________________________________________________________
Story
by Tommaso DI Marco (Italy) May 2, 2019
Tommaso DI Marco
(Forum Facebook Emptynosesyndromeitaly /24/04/2019)
Happy Easter and have
a good day everyone, even if it's late. I have just registered on Facebook and
joined this forum to share my experience, give and get advice about this
terrible condition called Empty Nose Syndrome.
My name is Tommaso, I
am 54 years old and I was operated by Dr. Piazza on April 9, 2019. I will
briefly tell my story. At the age of 25, I underwent a near-total resection
of the lower turbinates because at the time I was suffering from severe
nasal congestion that prevented me from breathing.
My torment began about ten years ago when I
began to experience the first symptoms of this syndrome, which at the time was
diagnosed and recognized by Dr. Dondè in Milan . I started searching for a solution until I
consulted the forum Tapatalk where I read about Professor Piazza. (Thanks
Lucas). I therefore decided to undergo surgery after the consultation with
Professor Piazza at his "private practice" in Parma.
My condition was really serious because the
"butcher" who operated on me burned away almost all my turbinates,
but did not touch my oblique nasal septum. The most disabling symptoms were the
paradoxical nasal congestion and
a slight difficulty in breathing. I didn't suffer from dryness, sleep problems
or crusts.
The operation in
Mantova was first based on a septoplasty, which was necessary because it was
impossible to first transplant cartilage from the ribs to implant as a
replacement for the missing turbinates. In addition, cartilage was implanted on
the sides of the nasal septum to restore volume and improve airflow.
Currently, although it is still early to assess
the results, the following symptoms have occurred: dryness and crusting,
increased feeling of difficulty breathing and insomnia. The only thing that has disappeared is the
paradoxical nasal congestion. So at the moment my condition has
deteriorated. I meet Dr. Coste in a few weeks to find out what needs to be
done. That's all for now. Thank you for your attention.
Tommaso Di Marco
_____________________________________________________________
Story
by Stephen S. (United Kingdom) March 17, 2019
My name is Stephen S., I am 38 years old and I
live in the UK. I wanted to share my experience to show that there are victims
of Empty Nose Syndrome all over the world. Here is my story:
2009: I suffered from allergies and nasal congestion,
which was uncomfortable because I couldn't breathe through my nose. My doctor
had prescribed decongestant nasal sprays which did not help at all. I have
never suffered from inflammation of the nose.
13/09/2010: Turbinectomy of the lower
turbinates on both sides, septoplasty, adenoidectomy and submucosa diathermy
Turbinectomy: This
is a surgical procedure in which the lower turbinates are removed or reduced.
Septoplasty: This is
a surgical procedure to correct a deviated nasal septum. The nasal septum is
the thin wall that separates the two nostrils from each other.
Adenoidectomy: This
is an operation to remove the adenoids, which are small glands located behind
the nose and above the throat.
Submucosal
diathermy: Diathermy is a method that uses electric current to cut or coagulate
tissue. This procedure can be used to reduce the size of tissue or to treat
various types of nasal problems.
After four weeks of
ineffective treatment, I went to an ENT doctor in Emersons Green, Bristol, who
had been recommended by my GP. The doctor diagnosed me with enlargement of
the lower turbinates and oblique nasal septum and suggested a turbinectomy of
the lower turbinates on both sides, along with septoplasty, adenoidectomy
and submucosal diathermy. He insisted on operating on me.
I accepted the
operation, I had never heard of turbinates or the risks of turbinectomies. The
doctor never mentioned the risks or Empty Nose Syndrome. I didn't ask any
questions, I trusted him. On the informed consent and operative protocol there
was also no reference to Empty Nose Syndrome.
If I had been told
about this, I would never have accepted this destructive surgery with
devastating symptoms such as (suffocation, feeling of an empty nose /
paradoxical nasal congestion, insomnia, non-reparative sleep, fatigue and
chronic pain).
A commercial,
unscrupulous ENT doctor performed four surgical procedures at once. An
unnecessary operation with irreversible consequences, with insufficient
operational reasons, which worsened my original state of health.
16/03/2019: It is now nine years since I
started living with Empty Nose Syndrome. Since this operation I have never had
a good day and have never felt well. The feeling of suffocation that I
experience has led me to go to hospital twice , two years ago and last year, and I have had to
call an ambulance... This surgeon has ruined my life.
Since 2010, I have consulted four otolaryngologists and six doctors who have not been able to help me. They have prescribed antidepressants and sleeping pills which give me no relief. The only way to feel better and get rid of these symptoms is to find a treatment for Empty Nose Syndrome. Tablets do no good. Stephen WS
________________________________________________________
Testimony
of Piergiogio P. (Italy) 22 September 2018
April 4, 2013 (Septoplasty + lower nasal musculectomy):
Since my endonasal surgery, I no longer have a
normal life, I no longer live. At
that time I went for an examination of the throat at Santissima Hospital in
Cagliari. They said everything was fine and that I didn't have polyps on my
vocal cords, but they recommended that I have a septoplasty because my septum
was crooked and the cartilage was sticking out of one nostril.
I initially declined
the procedure because the rest of the examination was normal, but because I had
difficulty breathing due to chronic obstructive bronchitis that developed
gradually in the factory where I worked and where the air was particularly
unhealthy, I finally agreed to the operation on faith that it would help me
breathe better. Sure, my work wasn't doing me any good, but I didn't feel too
bad because I regularly ran every weekend for fifty minutes. Since the surgery
I have not been able to do it anymore.
I consulted a second
ENT doctor at the same hospital, who after an endoscopic examination wrote in
his report that I had bad breathing on both sides, without informing me of
this. I was therefore operated on for a septoplasty, but the
otolaryngologist also carried out a second surgical procedure: amputation of my
lower turbinates, this without informing me in advance or obtaining my consent.
I informed this ENT
doctor before the operation that I had chronic obstructive bronchitis. How can
a reasonable otolaryngologist perform an amputation of my lower turbinates when
I had chronic obstructive bronchitis to begin with? I let you imagine the
harmful consequences of such an action on my state of health!
For three years this surgeon hid from me that
he had amputated my turbinates. He also called my pulmonologist to ask him not
to inform me that the deterioration of my health was due to my nose, which was a consequence of this operation which
had also affected my private, social and professional life, as I could not work
for five years.
July 12, 2018 (Cartilage implant on
Septum)
I was operated on by
Professor Piazza in Parma with cartilage implants for the reconstruction of the
lower turbinates. I underwent the same procedure as Luca Salvarani, victim of
Empty Nose Syndrome, who was previously operated on successfully by this
professor.
The procedure is
recent, so I'm waiting to judge the results. At the moment, I notice that I
have more moisture in my nose, and that the excessive air flow that entered my
nose earlier has been reduced. According to Professor Piazza, the condition of
my mucosa has improved significantly.
However, my nose is still dry and I am
currently experiencing no improvement in my bronchi and throat which are still
inflamed and are getting worse day by day. I feel like I'm not getting enough
air.
I use Ialoclean spray
to moisturize my nose, and I wash it every day with a saline solution. I also
have a periodic cortisone treatment and use aerosols.
I consult my pulmonologist regularly and I do not use CPAP. I want to emphasize that before this surgery I had a healthy mucous membrane and no problems with the turbinates. I will see Professor Piazza again in eighteen months for an examination and to see if this transplant is adequate. Piergiogio P.
___________________________________________________________
Testimony
of Sébastien C. (France) 5 September 2018
I am forty-one years old and suffer from
secondary atrophic rhinitis, or Empty Nose Syndrome. I have undergone three
surgeries.
1998: First operation (Carbon atom)
(A carbon tetatoma is
a type of cyst that forms in the middle ear and can cause chronic infections
and inflammation. Surgery usually involves removing this cyst)
I was twenty and
twenty-one years old when Dr. L., otolaryngologist in La Rochelle, operated on
me. First, in 1998, I had surgery for a carbon tetatoma on the right ear (a
skin cyst that leads to infection and dangerous chronic otitis media), and then
in 1999, for a septoplasty with inferior turbinate resection . After
this I have had severe dryness in the mucous membrane and a feeling of nasal
congestion. Today I still don't know if this sudden dryness was due to the
surgery or to me smoking?
1999: A second Septumplasty + surgery of
the lower nostrils
Dr. L. then
prescribed a six-month to a year course of cortisone nasal sprays, which were
completely ineffective, and then told my parents that he would correct my nasal
problem with a volume reduction of the inferior turbinates, under the pretense
that my septum was not straight. He emphasized that he would do two things at
once: I have later learned that everyone has a deviation, a more or less
oblique nasal septum, which is not a reason for surgery.
The ENT doctor
presented this second surgery as simple and downplayed the risks. I trusted
him! (As for Dr. L., after my second operation I consulted Professor P. in
Bordeaux and finally underwent a third operation for my hearing problem).
After the second operation, I lived in hell for
several years. My condition worsened. When I woke up after the operation, I had wadding in my nose and then
I got scabs and severe dryness in my nose and mouth, chapped lips. Also a
blocked nose, the right nostril was more swollen and I had the feeling that I
could no longer feel my nose or the air I was breathing in, and so on…
I have seen Dr. L.
several times, who systematically downplayed my symptoms. As he remained
evasive, I learned to live with this, without really understanding what was
happening, something I only understood much later.
I still felt and knew
that my mucous membrane had become extremely sore, and only natural treatments
did me any good. I have consulted other otolaryngologists who suggested various
surgeries, and so on... The only positive thing is that I quickly quit smoking!
2013: Just five years ago, I finally found out
what I had: Dr. A. diagnosed me with secondary atrophic rhinitis, i.e. Empty
Nose Syndrome, after an endonasal examination. He knows Dr. L. well, but did not want to criticize
him. After several consultations, he finally admitted that his colleague should
not have operated on me, it would have only aggravated my problem.
He prescribed me:
Solacy, Gelositin and Fucidine, an antibiotic ointment, which nevertheless
improved my condition somewhat. He thinks I'm doing pretty well under the
circumstances. I think he said that because he must have seen worse cases than
mine, unfortunately!
I suffer mainly from the right nostril which
was cut too badly, and when Dr. A. put a cotton swab in my nose I could breathe
better. Over the years I feel
an improvement, but I still have difficult periods, especially with weather
changes. I can't cope with wind, heat, or too dry air that increases my
dryness in the nose. These are daily problems and chronic unpleasant
symptoms that you have to accept and relativize as much as possible if you want
to continue living.
Dr A. suggests no further intervention given
the atrophic mucosa which is far too thin. What really relieves me is the Fucidine ointment
that I use as a cure. It's an antibiotic cream, so I can't use it every day.
I just tried a new
cream, Révamil, which is natural and seems good. This week I also receive
Apo-rot Spray Hysan hyaluron, Hysan Nasensalbe and Liponasal Spray which I
bought from a German pharmacy website, adapted for the treatment of damaged
nasal mucosa which I will try.
I plan to make an
appointment with Professor M. in Nantes as I live in Charente-Maritime, to see
if he can improve my congestive condition. I don't think I will get any
implants. Unlike some others, I'm still lucky enough to have some concha left,
and most of all, I've learned to live with this iatrogenic disease for twenty
years now, and I notice it's not that bad compared to some others.
Sébastien C.
_______________________________________________________
Testimony
of Claudine D. (Belgium) 26 July 2018
In October 2017: I was operated by an ENT
doctor in Charleroi for a deviation in the nasal septum. In addition to the
septoplasty, without informing me in advance and without my consent, he also
performed a bilateral partial reduction of the inferior turbinates. So two
surgical procedures were performed!
He claimed I would
breathe better afterwards, and I believed him. I only had a slight deviation of
the nasal septum: I have since learned that everyone has a deviation of the
nasal septum, which is no reason for surgery.
I felt sick right after the procedure and my
problems really started three weeks later. My nose was constantly blocked, I no longer felt
that the air was passing freely and naturally, and then other symptoms
appeared: a chronic cough, headaches, intense fatigue and a lowered mood.
Currently, my breathing is no longer natural: I
have to constantly sniff to get any kind of air. I have to think about
breathing.
At follow-up visits,
the ENT doctor claimed everything was fine, but he lied to protect himself. In
fact, he wrote in his report: "The patient is breathing better," even
though I never said that. He then blamed an allergy problem (according to his
imagination) that was allegedly causing this blockage, even though all the skin
and blood tests performed showed that I had no allergies. He then claimed that
I had an inflammatory rhinitis, a vasomotor rhinitis... According to him, I had
every conceivable ENT disease!
December 2017:
Three months after
the procedure, during a consultation where my husband was present, I asked if
he had touched my nostrils. He assured me he had not. I was partially sedated,
although my breathing was very bad.
May 2018:
I submitted a report
to the hospital and informed the management. A mediation was initiated.
June 2018:
In the presence of the mediator, a family
member and the ENT doctor, he showed the radiographs and explained that he had
performed a bilateral partial nasal turbinate reduction. He also submitted the operation report where
this was clearly stated. I was completely shocked! He had assured me that he
had not touched my nostrils! When I asked: "You said you hadn't
touched the nostrils?", he replied with incredible confidence: "I
never said that
July 2018:
Right now, with the heat, the neuropathic pains
and symptoms are worse (facial pain, trigeminal nerve), I'm breathing very
poorly and notice an increased heart rate. I have been prescribed antidepressants, but
their side effects are too harmful, so I have stopped them.
It won't give me my breath back anyway.
Since nine months I have been suffering from Empty Nose Syndrome, as diagnosed by another ENT doctor, although unfortunately he could not write it down and admitted that there was nothing more to do. Before this destructive operation I lived well, I was healthy. Now my life is a nightmare, everything I used to like has lost all meaning, I withdraw and I fear the future. Beware of ENT doctors who promise miracles. The only miracle they can accomplish is to fill their wallets on your misfortune. Claudine D.
__________________________________________________________
Testimony
of Pascal M. (France) 8 June 2018
Letter from Pascal M,
victim of Empty Nose Syndrome, to Françoise, president of the association
"Stop aux Mutilations Nasales Iatrogènes"
2018: I work as a
firefighter in Paris, a very physical and exhausting job with an intense pace,
which consists of constant travel back and forth, tiring nights at the fire
station, daily training with the fire brigade and at the same time we are
building our family home with the birth of the children who are not started
sleeping through the night before they were three years old. I feel tired and
starting to find it difficult. I put this down to lack of sleep caused by a
stuffy nose when I go to bed.
I then consult an ENT doctor, Dr A. i Bruz, who
diagnoses me with chronic nasal congestion due to a nasal septal deviation and
bilaterally enlarged turbinates. He
suggests a septoplasty (correction of my nasal septum) along with a bilateral
turbinectomy (removal of my turbinates).
I trust him and
accept the operation which takes place on June 2, 2008, without being informed
of the serious side effects. I want to point out that I knew nothing about this
destructive surgery at the time…
The awakening was difficult and painful, and I
am told that everything has gone well. In the following days, I notice that my
nose is free of congestion, which at first gives me a feeling of well-being, but
unfortunately it is short-lived, as the air entering my nose begins to burn.
The visit to remove
the plates that held my nasal septum in place was particularly painful: intense
pain, feeling like the ENT doctor was ripping out part of my brain. Sweating. I
was about to pass out but the doctor reassures me that everything has gone
well.
The first winter was difficult: the first
autumn colds made me suffer, I can no longer stand the cold air flowing into my
nose and my nights are beginning to be difficult. The mood is affected...
2012:
I consult another ENT
doctor, Dr. Y. at the St Grégoire clinic in Rennes, who says that the
septoplasty has not helped and that there is still a problem. He performs
two electrocauterizations where he uses an instrument to burn my turbinates so
that they collapse. Now hell begins! I wander from consultation to
consultation in a desperate search for a solution, an improvement of my
condition: specialists and examinations of all kinds: ENT doctors,
neurologists, osteopaths, psychologists, magnetizers, pain civilization
centers, gastroenterologists, polysomnography, blood tests, CT scans , without
solving the problem.
Surfing the net I discover a website about problems
related to endonasal surgeries, I finally understand what I am suffering from:
I have suffered from Empty Nose Syndrome. At first I am happy, I tell my
family, everyone around me: doctors and so on... but I am met with general
incomprehension.
It is hard to accept that, in addition to being
injured, you have to make a self-diagnosis because the ENT doctors avoid
talking about Empty Nose Syndrome because these destructive surgeries are their
livelihood.
With the diagnosis
not established, Empty Nose Syndrome not recognized (now recognized in France),
denial by the ENT profession and even if you consult several ENT doctors, they
cover for each other so it is impossible to get a diagnosis of Empty Nose
Syndrome or the consequences of these destructive and unnecessary operations,
there is no solution. It is a lot to be taken seriously by those around you.
Currently, the most difficult to endure are the
non-reparative nights interrupted by micro-awakenings, the relationship with
others, my emotions are inhibited, my symptoms and pains rule my days.
For my wife it is also difficult because I
become antisocial and refuse many things: meals, invitations, sports activities
with my children, family weekends...
I have encouraged my
loved ones to visit your website www.syndromedunezvide.com
and it has been good that they can understand what I am going
through.
I live day by day and see no future...
Hugs of strength to
all victims of Empty Nose Syndrome, Pascal M. (France)
PS: We, Pascal's parents, allow ourselves to
add that life has become hell for our son and all his surroundings. We find it
very difficult to understand that current medicine has no solution. Our son
attempted suicide on May 25, 2018.
_____________________________________________________________
Mr. Justin Trudeau, Prime MinisterHonoré Mercier building, 3 floor
835, boulevard René-Levesque Est
Québec G1A 1B4
Hello Mr. Trudeau, I am writing to you because I am devastated, exhausted from not getting the help I need, tired of being told there is nothing wrong when I suffer tremendously, and tired of fighting to get my problem recognized by some ENT doctors . Some prefer to close their eyes for reasons I cannot explain.
I underwent surgery by Dr. AR at
Maisonneuve-Rosemont Hospital for a septoplasty (rectification of the nasal
septum) on April 13, 2017. The surgery was only to correct my nasal septum, but
this ENT doctor performed several other procedures without informing me in
advance, assuring me that the surgery was safe.
This doctor had me
sign a consent form that was stated to be to reserve a seat in the operating
room. Dr. AR added several procedures to increase their revenue, which
compromised my health. He performed a turbinectomy and removed five centimeters
of my turbinates. (A resection of more than one third, a practice that has been
abandoned by ENT doctors abroad because of the serious consequences). This
operation was almost fatal for me and made me consider suicide . The
operation is formally discouraged in France and other countries except in
extreme cases of nasal congestion and enlarged turbinates, which was not my
case.
In addition to removing five centimeters of the
turbinates, he burned them to stop the bleeding (which caused me to lose much
of the volume in the turbinates), He also performed a rhinoplasty and decided to remove three
centimeters of the nasal cartilage.
I feel like I only have skin left and no nose structure...
How is it possible,
Mr. Minister, to carry out such interventions in today's Canada? We can no
longer trust our doctors, some of whom only think of enriching themselves and
take advantage of the naivety of people like me to sell dangerous and unnecessary
operations.
I would like your
help to find a solution to my problems and not let such dangerous charlatans
continue to operate and exploit innocent people.
I am counting on you,
Mr. Minister, to conduct an investigation and help me with my legal action as
well as to cover the costs of medical, social and psychological treatment.
Sincerely, / Me.N., victim of Empty Nose Syndrome
__________________________________________________________
Testimony
of Rémi K. (France) 11 May 2018
My name is Rémi, I am
37 years old. In 2015, I consulted my general practitioner due to disturbances
in the sense of smell caused by a constant stuffy nose with dry secretions. My
doctor referred me to an otolaryngologist who examined me and gave me a two
month course of corticosteroids and told me to contact him again if the
treatment was not effective.
The treatment was
without result, but I did not go back to the ENT and continued my life as
usual, with a good lifestyle in the country, while being active and sporty, but
the problem remained.
2016
I decided to consult
another otolaryngologist who had difficulty examining my blocked sinuses. He
prescribed an X-ray which showed a relatively severe deviation of the nasal
septum and an enlargement of the turbinates. The doctor suggested a local
treatment to try to deflate the mucous membranes, but this was unsuccessful.
2017
A year later I
returned to this doctor who prescribed an allergy investigation which I carried
out: the tests were negative for respiratory allergies. The doctor suggested a
decongestant operation which I accepted.
2018
On March 8, I was operated on an outpatient
basis with a septoplasty and a partial lower reduction of the turbinates . When I left the hospital, I felt a little knocked
out and went home. The next day the doctor called to see how I was doing and
said I should feel relieved after the tamponades were removed. I went through
four difficult days breathing through my mouth because my nose was blocked with
tamponades and I had a lot of trouble sleeping.
The day of the
removal of the tamponades, everything went smoothly, without pain and with
minimal bleeding. After a quick clearing of my nose, I felt relieved and
noticed that I could breathe better. The doctor prescribed post-operative
treatment and told me to contact him only if there was an obstruction. When I
left the reception, I was euphoric: it was very nice to be able to fully feel
tastes and smells again, and I went home to enjoy a cup of coffee with brioche.
But this joy was short-lived. After several
rinses with physiological saline, my nose began to become increasingly blocked,
and I began to feel an airflow that was a little too fast, the air felt very
cold, a dry nose, and a reduction in the sense of smell even though the nose
was open. I gradually felt a lack of air which worried me, leading to anxiety
and very restless nights with many awakenings. A week later I returned to the doctor and told
him that I was not feeling well and asked for explanations.
He replied that the
operation had gone well, that he had touched the turbinates very little, and
that I should get used to it, as I had asked for better breathing. I continue
to feel uncomfortable and already regret having the surgery.
Time passes, almost a month without being able
to sleep: I wake up every two hours. I am starting to feel depressed and have
consulted my GP who put me on antidepressants and anti-anxiety medication. I feel like a zombie and despite the medication
I don't sleep better . I have therefore decided to stop this treatment and
am trying to free my mind, although it is difficult because I am constantly
focusing on my breathing and this dry nose, which is not extreme but still
present.
My daily symptoms are as follows: dry nose and
sticky secretions, too much air flow in one nostril (sensation of cold air that
irritates and burns the sinuses and gives pressure in the head), reduced
concentration and mood swings. Smell and taste abilities are random. As for
sleep, today I manage to sleep for about five hours straight, but anxiety upon
waking often prevents me from falling back to sleep.
Today I live with
this because I have no choice, and still try to be as active as possible, which
is very important. Even though I'm physically tired sometimes, exercise helps
keep my spirits up. Walking in nature and the sea air also help me a lot.
My surgery is
relatively new, it's almost two months ago, and at the moment I'm trying to
keep my nose as moist as possible by avoiding big temperature changes. I have a
humidifier at home and avoid climate controlled environments. I also use nasal
blankets which, in my case, help a little because I have slightly better nasal
resistance and my nose stays a little more moist.
In a few months I
will have a post-op x-ray. I advise anyone with problems with chronic nasal
congestion to try all possible methods of treatment in alternative medicine,
such as nasal irrigation (Neti pot), home remedies, and spa treatments, before
considering a surgical procedure or endonasal surgery that is irreversible.
Good luck to all /
Rémi K
__________________________________________________________
By
Joyce Co hen
Posted on March 29, 2018 Syndromedunezvide
Link to the original article written in English
Growing up near
Phoenix, Heather Schwan slogged through the seasons with itchy eyes, itchy
throats and runny noses. Every day she took a decongestant medicine.
"I used to think
that if I was ever kidnapped and they put silver tape over my mouth, I would
pass out," she says. “I wouldn't get enough oxygen through my nose. It's
scary to always have to keep your mouth open to breathe.”
After she married
Luke Schwan, the couple moved to Texas, not far from his Army base, Fort Hood.
Heather happily worked at her local Parks and Recreation Department.
A year and a half ago, she visited an
otolaryngologist in nearby Austin, hoping for a solution to her breathing
problems. He proposed a three-step approach: a balloon sinuplasty, a
septoplasty, and a turbinate reduction.
“He said I could go
back to work in two days,” says Heather, now 33. “The surgery seemed like a
normal thing. I was excited to feel better.”
When the anesthesia wore off, however, she felt
that something was wrong. "I felt like my cheekbones had been hit with a
mallet," she says. “My nose bled down my throat. I coughed up blood.” But
the doctor insisted that the inside of her nose looked fine.
But she couldn't sleep and felt like she was
suffocating.
In a panic and with great concern, she began to
search for information on the Internet. The news was terrifying. She had Empty
Nose Syndrome (ENS). The
rare iatrogenic condition caused by medical treatment affects a small
proportion of patients who undergo surgery of the turbinates. ENS is caused by
damage to the turbinates, cylindrical organs stacked in the nasal cavity three
per side that warm and humidify inhaled air. Dr. Subinoy Das, a rhinologist in
Columbus, Ohio, estimates that the complication affects 1 in 1,000 turbinate
surgeries.
"These
exceptions are absolutely devastating," says Dr. Das to PEOPLE.
"Although this surgery is very helpful in improving breathing, it comes
with rare, catastrophic risks."
ENS isn't even a
formal diagnosis, but last year saw several breakthroughs in the field: A
new Patient Outcomes Questionnaire, the ENS6Q, came into use, asking about six
specific Empty Nose sensations: choking, burning, openness, crusting, dryness,
and impaired air feeling. It complements the traditionally used SNOT
questionnaire, for Sino-Nasal Outcome Test.
Two studies from
researchers at The Ohio State University in Columbus showed that patients had
distorted nasal airflow as well as damage to the nerves in the turbinates.
"If we could
identify the risks in advance, that would be how we could advance this
field," says Dr. Das. He compares the feeling of suffocation to being
under water and not being able to rise to the surface.
"It's like you're trying to take a breath,
but your lungs aren't big enough," says Heather. The sensation is not
relieved by breathing through the mouth. She felt so bad that she had to leave
her job.
"I felt enormous guilt for putting my
family through this," she says. “It is such a difficult thing to
understand. I lost my sense of well-being.”
Heather and Luke, who
are parents to an 8-year-old son, Owen, had been waiting three years to adopt.
Two weeks after the operation, the phone rang. A baby girl was waiting.
"I just cried and said to my husband: How
can I bring a child into this life when I can't even take care of myself?"
says Heather. “I questioned our
decision to grow our family through adoption.”
But they rushed to
pick up little Maya, who is now almost 18 months old. “She saved me,” says
Heather.
Maya's arrival felt
like a new beginning. “A baby is so attention-seeking,” says Luke, who now
works in sales for a packaging company. “Heather had to live for someone else.”
And Heather connected
with others online who had similar nasal symptoms. They encouraged her to "persevere,
even though my life would forever be different," she says.
Last fall, Heather
visited Dr. Das, one of three surgeons in the United States who offer advanced
treatments for ENS patients, with injections to stimulate nerve growth or
fillers to change the contours of the nasal cavity. After the healing, she saw
a slight improvement.
She no longer feels
like she is suffocating all the time. But she still has to think about
breathing.
“It's like constantly
asking your heart to beat. Breathing is not something you should think about.”
Testimony
of Jean-François D. (France) 24
March 2018
January 2009:
I had surgery for a
septumplasty with bilateral inferior reduction of the turbinates due to a
deviation of the nasal septum with enlargement of the inferior turbinates. The
ENT had never mentioned that the turbinates would be operated on beforehand or
informed me that he would perform this conchotomy at the same time as the
septum operation. The problems with chronic rhinitis and various symptoms arose
very quickly after the operation. I put up with them and tried to get used to
it, believing that my condition would improve with time. But it didn't happen
that way.
2013:
It wasn't until four years later, when my GP
retired and gave me my medical records, that I discovered to my surprise and
shock that the ENT had, without informing me, performed a reduction of my
inferior turbinates.
March 2015:
After researching the matter, I understood the
implications of the removal of my lower turbinates and realized that all my
disabling symptoms stemmed from this harmful surgery. I therefore consulted
another otolaryngologist, Dr. R. at the Hospital Bretonneau in Tours, who
diagnosed me with Empty Nose Syndrome and wrote in his report:
"Mr. D. suffers
from an Empty Nose Syndrome, which is explained by a changed anatomy,
especially on the left side. I would like Mr. D. to undergo a CT scan of the
facial sinuses to rule out chronic sinusitis. If the CT scan is normal, we can
consider atypical Empty Nose Syndrome, for which treatments are difficult and
of uncertain efficacy.” The CT scan showed no evidence of chronic sinusitis,
but demonstrated an osteoma in the frontal sinus, which was not responsible for
the frontal pains.
July to November 2015:
Dryness of the eyes, nose and mouth, discomfort
in the left ear with tinnitus and other symptoms appeared. The otolaryngologist then suggested sessions of
sophrology, talked about anxiety, runny nose caused by a "dry nose
syndrome" and referred me to a colleague in internal medicine for an
investigation.
January 2016:
The investigation confirmed a continued runny
nose, the presence of dry mouth and eyes with the onset of tinnitus in the left
ear, lacrimation, eye stinging and sensation of sand grains, despite the ophthalmological examination being
normal...
All the treatments I have tried (Nasonex,
Atrovent, saline nasal rinses, Balsamorhinol, inhalations, essential oils,
creams, etc.) have proven to be completely ineffective. Today I take a painkiller of level II to relieve my
pain: Tramadol 200 mg together with paracetamol, the generic of which is
included in the list of 25 drugs banned from sale, according to a notice from
the National Medicines Agency on December 18, which initiated a procedure to
withdraw 25 generic drugs marketed in France, due to violations committed by a
company that conducted clinical bioequivalence studies on generic drugs / Jean-Francois
D.
___________________________________________________________
Testimony
of Jean-Louis D. (France) March 5, 2018, Written by SNV
I will never forget
that date. I have only been operated on once in my life, at the hospital in
Troyes, for pansinusitis and a deviated nasal septum . I was only informed
that I would have a sinus cleaning, but in reality the ENT doctor was not
satisfied with a single endonasal operation: no! He carried out at the same
time, without informing me in advance:
A bilateral anterior ethmoidectomy (I have no
middle turbinates, so a radical middle turbinectomy), a bilateral meatoectomy
and a lower turbinatomy (resection of my lower turbinates).
This surgery did no good and has only worsened
my chronic pansinusitis. I also suffer from Empty Nose Syndrome. My condition
continues to deteriorate . In
the winter I'm more sensitive to bronchitis because I don't have any filters
anymore. My sinuses are too open: my mucous membrane has become
extremely dry, causing me to bleed and have developed secondary atrophic
rhinitis over the years. In the summer, my nose causes me a lot of pain:
burning and continuous nasal pains, where I no longer have any turbinates. I
have the sensation of having a "ghost nose", of no longer feeling my
breath.
Psychologically, it
is very difficult to live like this. For a long time I was told that these
symptoms were linked to a depressive state. Denial, indifference, isolation,
lack of understanding and impact on my work life: I can no longer work
normally, it's my path, a path as a victim of Empty Nose Syndrome...
When I consulted a new ear, nose and throat
doctor, he said bluntly: “You've had your turbinates removed, why didn't you
come to me sooner? Now there is nothing more to do.”
One question constantly torments me: how is it possible to carry out four operations at once for a simple cleansing of the sinuses? Not a day goes by without me regretting believing this doctor's promises, without feeling guilty for accepting this dangerous, harmful and unnecessary surgery. Jean-Louis D.
___________________________________________________________
Testimonial
from Christina L. (France) 12
February 2018
2007: First operation (bilateral meatoectomy)
I was first operated
on by Dr. B., otolaryngologist in Sainte-Maxime, for dental implant migration
and presence of aspergillosis in the maxillary sinus, following a previously
performed CT scan. (I would like to point out that I had forgotten my CT scan
that day and Dr. B. decided to perform the surgery anyway).
Afterwards I started
getting big scabs, I had terrible migraines but Dr. B. said it was normal and I
just needed to rinse my nose with salt water. My condition worsened: it became
very infected. One morning I woke up with my left eye closed and purulent.
2008: Second operation (septoplasty + partial
lower turbinatomy)
My GP sent me
urgently to Timone where I had another operation to remove the infection. Even
so, I continued to cheat every day. My family doctor did not understand why, I
consulted several otolaryngologists but none could relieve my problems.
2010: 3rd operation. (septoplasty + total
resection of the turbinates
Dr. S.,
otolaryngologist, suggested straightening my nasal septum, and assured me that
it would solve my problems. After the surgery he informed me that he had
widened the passage further by removing the few remaining turbinates!
Since then, my health has continued to
deteriorate. I still blow my nose often and get recurrent infections as a
result of an atrophic nasal mucosa and as I am missing my turbinates, I also
lack the natural ability to filter the air and I often suffer from bronchitis
and have to use antibiotics to recover.
I have developed a chronic cough and am plagued
by thick, suffocating phlegm that often wakes me up at night. My sleep is no
longer restorative and I am very tired. My facial pain has increased
significantly.
I have become
depressed and sometimes have dark thoughts. However, I continue to work as a
teacher, but with this terrible pain (I use a lot of ibuprofen for relief) I
admit that it is becoming increasingly difficult to teach in these
conditions...
For a long time I did
not understand what was happening, because the ENT doctors' answer was always
the same: "We can't do anything" but no one could tell what I was
suffering from until Dr. B., otolaryngologist in Cogolin, diagnosed me with
Empty Nose Syndrome, and lamented the harmful operations which he called
"slaughter" .
He offered no
solution, not surprisingly, because there is none / Christina L.
__________________________________________________________
Story
by Serge Z. (France)
December
17, 2017
At age eight: The ear, nose and throat doctor at the Hôpital des
Enfants Malades aggravated my sinusitis by punctures in my maxillary sinuses,
as well as injections of penicillin both in the sinuses and generally.
He claimed that I had
a bacteria that was resistant to all antibiotics without trying other
antibiotics, without performing any bacteriological tests on the nasal
secretions, or doing any antibiotic sensitivity tests...
In September 1968: At the age of nineteen, the same doctor extremely
aggravated my frontal sinusitis with PROETZ flushes, as well as injections of
chloramphenicol into the sinuses, and aerosols of chloramphenicol and
bacteriophages.
He also burned the turbinates in the left
nostril, causing Empty Nose Syndrome.
This doctor is the
author of a book published at Maloine (1959) on sinusitis and its treatment, in
which he claimed to be able to cure sinusitis without surgery. Because of
him I constantly suffer from worsening frontal sinusitis which causes extremely
severe headaches.
In 1984: My sinusitis caused a bleeding rectocolitis (a
chronic inflammatory bowel disease) that required a total colectomy (removal of
the colon), through three operations at Saint Antoine Hospital.
Since 2006: I am assessed as disabled in
category II by CPAM. / Serge
Z.
Story
by Jean-Yves C. (France)
December
17, 2017
July 2009: I feel a foul-smelling pain in my throat, and my
mother sends me to an ear, nose and throat doctor. He determines that I have
caseum (smelly whitish spots), and at the same time examines my nose and my
ears. He says my nose is blocked. He suggests removal of the tonsils as well
as a bilateral lower amputation of the turbinates, and says that there is
only a 1% chance of failure, that the operation is harmless, and that I will
breathe much better afterwards. He also wants to do a Septoplasty because he
claims that my nasal septum is crooked. I trust him and agree to the operation
which will take place on November 4, 2009.
After the operation, the consequences are
catastrophic. I feel sick, anxious, clench my teeth, have a constant headache,
feel cold and can't sleep. I even have difficulty speaking. I tell my family and go back to the ear, nose and
throat doctor who doesn't want to know and leaves me. I consult my family
doctor, do various tests and blood tests, and see several ear, nose and throat
doctors. Some are silent, others are curious as to who performed the operation
and why, and if the operating doctor had suggested any treatment before the
operation?
Since this surgery I have continued to feel
very ill. In addition to
the aforementioned symptoms, I no longer have a runny nose, my nose burns,
scabs, and I sneeze blood in the winter...
2012:
Three years after this destructive operation, I
search the Internet for "turbinatomy", the cause of Empty Nose
Syndrome, and there is the disaster: I finally understand what I suffer from
day and night!
I have today
consulted twenty doctors and professors in the ear, nose and throat area,
without finding any solution, because there is none. My life is completely
ruined, I suffer around the clock. Since this operation I have become
depressed, and I regularly see a psychiatrist who prescribes sleeping pills and
anti-depressants, as well as taking tramadol, a pain reliever based on
morphine.
May 2016:
After warning my parents for months, I
swallow 150 stilnox sleeping pills: a dramatic suicide attempt. I am alive, but
hell continues for me and many others. I wish these malicious operations are banned because
they are too dangerous!
I was twenty-seven years old when I underwent
this destructive operation, a young man who was happy when my life changed
overnight.
Today I am
thirty-five years old and in a deplorable condition, and my dark thoughts
remain and will remain until medicine is developed! I say STOP TURBINATOMY! Jean-Yves
C.
___________________________________________________________
Story
from Stéphanie L. (New Caledonia)
November
26, 2017
August 2013 (first operation)
I complain of pain on
the left side of the face (tingling) and moderate facial edema. My general
practitioner orders a CT scan, and I consult a primary ear, nose and throat
doctor who diagnoses a dental filling, as he says, in the left sinus. He says,
"I will widen the entrance to the sinus to be able to remove the dental
filling." I therefore have surgery on August 26 with a left middle
meatotomy. The specimen shows "a chronic inflammation and no suspicious lesions,
subject to fixation artifacts." Immediately after the operation, pain
occurs in the left nostril with nasal congestion, which, according to the ear,
nose and throat doctor, is psychosomatic and which intensified in September
2013.
October 2013:
I consult a new ear,
nose and throat doctor who prescribes a CT scan and takes a sample from the
left nostril, which reveals the presence of staphylococcus aureus, a result of
the operation. He follows me until February 2014 to treat the staphylococci
with continuous antibiotic therapy and sinus rinses.
He writes: "I
have compared the examination with the one performed on August 22, 2013. Since
the previous examination, the patient has undergone a middle meatotomy with a
left middle turbinate...". The CT report also notes "consisting of
mild hyperplasia of the sinus mucosa with presence of dental filling in the
sinus...".
Middle meatotomy
– A surgical procedure in which an opening is made in the middle part of
the sinus (meatus) to improve drainage and visibility of the sinuses. This
procedure is done to treat problems such as blockages in the sinuses.
Left Middle
Turbinotomy – An operation in which the middle turbinate (turbinate) on the
left side of the nose is removed or reduced. Turbinotomy is done to improve
airflow through the nose and relieve symptoms such as nasal congestion.
The first ear, nose and throat doctor has
performed a radical left amputation of my middle turbinates, in addition to the
meatotomy, without this being mentioned in my operative report and without
being informed in advance...
March 2014 (second operation):
The otolaryngologist
wants to remove the tooth filling, so I am having a meatotomy and sinus floor
scraping to clear the remaining tooth material. The test shows no acute
inflammation and no foreign object.
From March 2014 to March 2017:
Further increasing pain, in addition to those
previously mentioned, occurs: constant posterior nasal discharge, yellow,
green, red or gray runny nose, pain in the ear (problems with pressure
equalization, feeling of blocked ear), pain in the eye, pain on the left side
of the face, burning pain in the nostril when I breathe, toothache, lump at the
base of the skull, migraine, sleep problems, fatigue, shortness of breath.
I see several times the
other ear, nose and throat doctor who constantly repeats: "Everything is
fine, ma'am, in the ear, nose and throat area, go to a dentist", implying
that all my pains are psychosomatic... I therefore consult a dentist several
times who does a dental CT and says: "I have treated a tooth. Everything
is fine: in the dental area", but my pains are still present and
increasing...
March 2017:
I consult a third
ear, nose and throat doctor who orders three CT scans. The truth finally comes
out! I am not crazy or depressed: my pains have an organic cause.
Here is what he
writes: "Symptomatic facial nerve pain induced and sustained by a
maxillary sinus pathology. Anatomically destroyed by previous procedures with a
mutilating resection of the entire inferior turbinate and sinus nasal wall.
Catastrophic iatrogenic situation. Uncontrollable pains. The situation is
extremely complex. His iatrogenic damage is great and the reconstruction
complicated.I understand that I have been destroyed..
April 2017:
My medical record is
sent to a professor of ENT in Paris, specialized in neurosurgery and complex
ENT pathologies, with a request for a neurologist's opinion. (Time for visit
set to 30 November 2017)
May 2017:
I consult a
neurologist in Nouméa and also a neurologist from Sydney who diagnoses a
symptomatic nerve pain caused by endonasal surgery. He orders an MRI and
requests an assessment from a fourth ear, nose and throat doctor.
June/July/August 2017:
I consult the fourth
ear, nose and throat doctor who starts a basic treatment. I undergo MRI which
shows no obvious abnormalities in facial acoustic bundles and trigeminal nerve.
The fourth ear, nose and throat doctor then changes my basic treatment. The
diagnosis Empty Nose Syndrome is lifted. Here's what the neurologist says:
"Empty Nose Syndrome? A professional opinion is necessary, we are not
competent in your case."
I also want to point
out that the third ear, nose and throat doctor talked about mutilation, a
catastrophically bad iatrogenic situation but never wrote that I had Empty Nose
Syndrome. It was only when I saw a TV program: "Engrenage infernal:
offre de la médecine" where Eric Canaux, victim of ENS, was interviewed,
that I understood that I was suffering from this iatrogenic disease... When
I mentioned Empty Nose Syndrome, the last two ENTs confirmed it, although they
didn't write it.
Since August 28, 2017, I have been on long-term sick leave, the occupational health service has declared me unable to return to my work at the moment and my condition requires psychiatric follow-up. I have since been on long term sick leave.I am attaching my CT scan to show the mutilation I have been subjected to and the danger of endonasal surgery... Stephanie L.
__________________________________________________________
Testimony
of Sandrine I. (France) 11 November 2017
Before I begin my story, I would like to
clarify that, due to the consequences of endonasal surgery, I am classified as
a category II invalid.
I have no middle turbinates left after a
bilateral ethmoidectomy in 1997. I also had a total resection of my inferior
turbinates, and I now only have 20% of my inferior turbinates left on the left
and 50% on the right. This
as a result of the lower Total turbinatomy that was performed in 2008. I have
undergone four endonasal surgeries.
1997:
First operation:
bilateral ethmoidectomy. I had many polyps due to my asthma and various
allergies (food, mites, cypress, grass).
2002:
Second surgery:
because the polyps had come back, I had to have surgery again for a left
polypectomy.
2008:
Third operation: collapse of the nasal vault
with lower reduction of the turbinates. After this procedure, my condition
worsens, several disabling symptoms appear: recurring headaches, dry nose,
inability to sneeze, laryngitis after laryngitis, paradoxical nasal congestion
(admitted in a letter from an ENT specialist), insomnia, nightmares with a
feeling of suffocation, chronic fatigue, I suffer a lot on the left side of the
nose. For the past year and a half, I have had constant infections, including
staph infections, facial pain, and hyperventilation.
The condition of my nasal lining is not good
and I have been diagnosed with atrophic rhinitis (an atrophic/degenerative
change of my nasal lining due to too wide open nasal cavity). My pulmonologist
has also noted that, in addition to my asthma, I have dyspnea (breathing
problems) and a constant secondary infection from the many endonasal surgeries.
I have therefore returned to the surgeon who operated on me, but he has
abandoned me.
February 2017:
Fourth operation: I
was so infected that, on the advice of Benoît R. (an ENS victim), I consulted
Professor C. in Nice who took care of me by performing a restoration of the
left meatotomy for chronic ethmoiditis and a cleansing to remove the infection,
because I could no longer get rid of the staphylococci that had invaded my
nose.
Professor C. said he
could do no more and advised me not to undergo any more operations. He admitted
that I only had 20% of the concha left, while at least 50% is needed for the
concha to be able to do their filtering work... You immediately understand what
that means, but he didn't write anything about it. However, when we explained
our sufferings and symptoms, he did not deny them. When I was hospitalized, he
was very attentive and responsive.
In the last two years
I have seen two ENT specialists from the Alpes-Maritimes, who have diagnosed me
with Empty Nose Syndrome.
November 18, 2016:
Mrs. I. has already undergone several
operations on her sinuses, and unfortunately a very large part of the concha
has been removed. This has led to her nose feeling empty and wide open,
especially on the left side. The
sinuses located to the side of the nose (the maxillary) and behind the nose
(the ethmoidal) have connected with the nasal cavity, creating a large space
that does not drain properly. It's still there on the left side..."25
September 2017:
The other ENT
specialist noted: "The most recent operation was in February 2017 with a
restoration of the left meatotomy for chronic ethmoiditis. An inflammatory
mucosa is noted. However, there are no lower turbinates left and I believe this
patient has an empty nose syndrome , that is, there is a paradoxical
feeling of blockage because there is no sensitivity of the mucous membrane to
the air flow, giving the impression that the air does not pass even though it
is very well ventilated d. The microbiological sample shows a Klebsiella
oxytoca, an unusual bacteria. .. It is also noted in her medical history that
she has allergies to grass pollen, which does not improve the local
situation... No more surgical interventions can be done, only local treatment
and good nasal hygiene...”
Since then, my condition has continued to
deteriorate , and in addition to
the aforementioned devastating symptoms, I now also suffer from
gastroesophageal reflux, which doesn't make matters any better. I don't know if
it is related to Empty Nose Syndrome...
When I have a lot of pain, I take cortisone,
which relieves the inflammation somewhat, but when the treatment ends, my
symptoms return. This drug prevents me from sleeping, so now I get tramadol for
the pain . I regularly undergo
acupuncture sessions to try to alleviate my suffering. I also take an
antihistamine, recommended by the ENT specialist, which he says can help me and
improve my sleep.
Of course, this poor state of health has
psychological effects: I regularly feel depressed and mentally exhausted.
Fortunately, I am fortunate to be understood by my husband and friends, unlike
other victims of Empty Nose Syndrome.
I now know that a polyposis in the nose due to an allergic condition cannot be cured. Sure, you can remove the polyps when they are too bothersome, but they will grow back. If my ethmoidectomy was warranted for the removal of my polyps, what about the lower turbinate amputation performed in 2008? A destructive, dangerous, unnecessary and inappropriate operation responsible for my disabling condition and my many sufferings. Sandrine l
_____________________________________________________________
Marie
Hélène B testimony (France) 23 October 2017
Since I was seven years
old, I have always had a cold and been sick, with recurring sinus infections,
eight times a year, each time treated with antibiotics and cortisone. I had
also been diagnosed with an allergy to mites, dust and grass after a
sensitivity test.
Year 1969:
I underwent a first endonasal surgery:
septoplasty, because I had a deviated nasal septum and blocked nose. However,
this operation turned out to be completely unnecessary: there was no
improvement in my health.
Year 1996:
As my problems persisted, I consulted an ear,
nose and throat doctor who suggested a second operation. I finally agreed in
the hope of improvement and had surgery for a bilateral turbinectomy with
extensive resection of my lower and middle turbinates . I would like to point out that the doctor never
informed me or explained the nature or the secondary risks of this surgery, or
that he would perform this procedure in advance. He only said that my health
would improve, which was not the case even after I did the spa.
Year 1998:
Since there was still
no improvement, the doctor suggested that I undergo a third operation. This
time I was operated on for a meatalotomy. After the operation, I first noticed
an improvement: my nose was finally open and I had fewer sinus infections,
which only occurred during allergy periods.
meatalotomy . This procedure involves making an incision or opening in the nasal passage (meatus) to improve drainage from the sinuses.
But eventually I began to feel that something was wrong: I had too much air when inhaling and felt that my nose was too open, as if it was no longer filtering anything. I felt discomfort from the rapid flow of unfiltered air in my nostrils and became hypersensitive to temperature changes. I could no longer cope with drafts, cold, heat, air conditioning or heating.
Year 2016:
After two months of
treatment and a course, my sinuses finally opened up, but this improvement was
short-lived and the symptoms I mentioned earlier gradually returned. I had
an x-ray which showed "a bilateral turbinectomy with extensive resection
of my lower and middle turbinates".
When I searched for "turbinectomy"
online, I came across "Empty Nose Syndrome" which is an iatrogenic
disease that develops after a turbinectomy or resection of the turbinates. I
finally understood what I was suffering from!! I immediately made an
appointment with the doctor and asked if I had Empty Nose Syndrome? He
confirmed that I had this disease.
He advised me to
consult a pulmonologist who said that everything was fine and that my allergies
had disappeared as if by magic, but I noticed that my condition was
deteriorating.
In December 2016:
I spent ten days in a
house under renovation, which made the situation even worse. I inhaled all the
dust because I no longer had a filter in my nose, which led to sinusitis,
bronchitis and asthma and another treatment for two months.
Over the years, other symptoms have arisen:
recurring headaches, facial pain, hyperventilation, clear or thick mucus
constantly running down the back of my throat with a constantly stuffy nose,
and an inability to sneeze. I feel that my nose is too open, but I have the
impression that it is blocked. Already in the morning I am tired. My sleep is
also affected if I have purulent sinusitis or a bad cold; I am constantly out
of breath.
When I go out, I am forced to wear a scarf over
my nose at all times due to my hypersensitivity to temperature changes, as I
can no longer cope with air suddenly rushing into my nostrils.
Because of all this, I am often depressed because I am aware that there is no solution, no treatment, no conceivable cure. Empty Nose Syndrome is an irreversible iatrogenic disease caused by endonasal surgery .Marie-Hélène B.
__________________________________________________________
Ludovic
Sery's testimony on Empty Nose Syndrome (ENS)
Hello everyone, As a
victim of Empty Nose Syndrome (ENS) since 2002, this blog is my testimony about
how I discovered the syndrome and what I have done to overcome it.
Background to ENS:
ENS is an iatrogenic disease, meaning it is caused by medical errors. For me,
it is an operation performed by an ear, nose and throat doctor: turbinectomy
(bilateral or total). This surgery is a deviation performed and recommended by
ear, nose and throat doctors for chronic rhinitis, recurrent nasal congestion
caused by allergies, hormone problems or nasal septum deviation. For these
specialists, the turbinates swell, and the solution is to remove them.
The problem is that
they behave more like butchers than surgeons, because they operate on the
turbinates without understanding their function. To them it is a harmless
procedure, but it is not at all the case, because otolaryngologists who perform
these operations minimize the role and importance of the turbinates, and the
patients they condemn to disability by removing part or all of the turbinates
suffer hard.
A little explanation
for those who haven't read: Wikipedia
on Empty Nose Syndrome , otherwise skip to the story.
Only a few
otolaryngologists in France are aware of the role of the turbinates and their
complexity. In the United States, a report has been made on their importance
and prohibits all interventions on them after seeing an alarming number of
victims. Dr. Steven Houser says: "Our nose is our lungs". The clams
are crucial; they act as a pressure regulator for the air we breathe thanks to
their shape. Any intervention on them leads to breathing problems, such as
getting too much or too little air, poor pressure regulation. They also help to
warm the air we breathe in, which is important for filtering what we breathe
in: the humidity level of the air and the function of the nose are crucial for
dealing with dust, cold air, pollutants and microbes. In addition, in the
nostrils there are airflow sensors that are directly connected to the brain to
inform it of the amount of air inhaled and reaching the lungs, making it even
more important to have the right amount of air, heating and filtration. In
short, changes or removal of the turbinates can cause major damage. It's like
having a car with a misadjusted air flow meter and a broken air filter!
Some ear, nose and throat
doctors in France have realized the mistakes of their colleagues and are
beginning to care for their victims and consider their suffering. Some try to
"repair" but only those who really know the syndrome. No operation is
truly perfect; for my part, after many rejections, I can't recommend using
implants, except ear cartilage implants, but I don't have enough testimonials
to make a serious recommendation.
Here begins my story:
Had surgery on the turbinates in 2002 with
bilateral turbinectomies (my lower turbinates were amputated), then developed
the syndrome a few months later. My nose often became inflamed, something that
almost never happened before. I
began to regret the operation that was claimed to be without risk. My throat
and mouth were constantly dry, I was constantly thirsty and had
difficulty breathing. I thought the anesthesia had tired my heart, and that
a little exercise would help. I had rhinorrhea (nasal congestion), and I
thought my nose wasn't working properly after the surgery. I was hoping it
would get better. The problem was that it got worse with headaches every
night, abnormal rhinorrhea, bad smell from the nose, difficulty breathing and
recurring ear, nose and throat infections. I really preferred my previous
allergic rhinitis, which only plagued me four months a year. Now it was a
year-long nightmare, especially during the winter.
I went to an ear,
nose and throat doctor a year later to complain. For him, I was "too
sensitive to temperature changes" and a "small nature". He gave
me medicine to strengthen my immune system. To him the operation was a success,
and he didn't see why I was complaining.
Doctors and
otolaryngologists in Grenoble did not understand why I was complaining. My
attending physician and an ear, nose, and throat physician acknowledged that
the problem was a therapeutic risk. I got nasal inflation, more rinses with
mineral water, sodium bicarbonate and anti-inflammatory drugs, and fatigue. I
showed severe symptoms of depression as a result of declining health and was
prescribed anti-anxiety drugs, anti-depressants and sleeping pills. My first
suicide attempt was in 2005; I was "locked up" for a month in
Remoulin in the south of France. I won't go into details, I only stayed two
weeks. The second attempt was by trying to drown after escaping from there, but
it was unsuccessful.
It caused me problems at work, where I was
absent too often according to my former boss. I was laid off for financial reasons in 2008
with no surprise. I was able to put a name to these symptoms when I
accidentally googled "turbinectomy danger" and found the article
"turbinectomy attention danger" and the link to Wikipedia on Empty
Nose Syndrome.
I read a testimony
that caught my interest, from Alain, who after being operated by Dr. Ayoun at
the Clinic du Louvre in Paris, doing much better. I contacted Alain, then
Jonathan called me and Benoit gave me information via email, and I got an
appointment with the doctor a month and a half later. In my case, I had
nothing to lose after two suicide attempts; I had to try everything possible to
get out of this state.
I was therefore operated on by Dr. Ayoun on
June 25, 2009 It wasn't that long ago. I got acrylic implants via to replace
the nasal concha artificially.
This surgery is new,
and I can't really recommend doing it, but I have heard of rejection (3
people), and I hope I won't have that. I can't say much more for now. The
operation is new, but I have noticed an improvement in my health; immediately
after waking up the extreme dry feeling in the throat and mouth disappeared. I
was completely swollen and felt less air coming in, but it was much more
comfortable in terms of nasal comfort, hard to explain. But more concretely, my
headaches have almost disappeared, I no longer have breathing difficulties and
inflammations in the ears, nose and throat are less frequent and when they
occur they last half as long as before, two days instead of three to five days.
Many people like me
suffer from ENS without knowing it. Very few doctors and specialists know about
ENS. For me, the improvement in my physical condition makes me feel better
mentally. The two are connected in the ENS. It's getting better, but I live in
uncertainty of a rejection.
Turning the page is
the best thing to do, but I have a testimony to give and a battle to fight. I
can't look at myself in the mirror every morning without having done what I
could for people like me. Without the testimonies of Alain and Jonathan, I
would still be suffering and going through ENS.
Now you have my
testimony too. Ludovic Sery September 30, 2009
Ludovic Sery
later took his own life and his memorial video is here.
__________________________________________________________
Francoise
M: Testimony (France) victim of Empty Nose Syndrome
8 October 2017,
Written by SNVPublished in #Vittnesmål
I've always had
ear-nose-throat problems since I was little: recurring strep throat,
rhinopharyngitis, etc. I grew up with antibiotics, nasal drops, and over time I
did spa baths, but my state of health remained unchanged.
After x-rays and
scans, I consulted an ear-nose-throat specialist whom I trusted, without having
any special knowledge. He promised me that he would fix my nose because I had a
slight deviated septum, which he said would lead to excellent breathing and no
more ear, nose, and throat problems. I ended up accepting his intervention in
the belief that I would be cured.
In 2003, I therefore
underwent a septoplasty and a reduction of the lower turbinates without being
informed of the risks and secondary consequences. My operative report stated:
"Septoplasty, Conchotomy. Cartilaginous and then bony resection...
Excision of left inferior turbinate and part of right inferior turbinate.
Luxation of left turbinate, same technique on right."
Very soon after the operation, not only did my
previously described symptoms persist, but my condition also worsened. I returned to the surgeon who asked me to be patient
and said everything would be fine with time. At that time, I think I consulted
every ear-nose-throat specialist in the Alpes-Maritimes, who all gave me the
same answer: "Let time take its course, be patient, your nose is perfect,
the operation went well!"
But I suffered more
and more. My GP always gave me antibiotics, cortisone, nose drops etc. It
was like before but even worse! Headache, facial pain, dryness, crusting and
burning sensations in the nose, post-nasal secretions running down the throat,
thick and sticky mucus, pain in the ears and chronic inflammation, swollen face
and eyes all the time, tearfulness. I want to point out that since this
operation I take Lexomil to sleep and when I wake up I am always tired. A pain
to live with daily! At the time, I didn't know what I was really suffering
from. Nobody told me the truth.
Until the day I found
through the Internet the website of the Association for Empty Nose Syndrome. I
was finally able to put a name to my symptoms and real suffering, but above all
that it was not an imagination as all these doctors claimed. I now know that
I suffer from Empty Nose Syndrome because in 2003 an otolaryngologist removed
my lower turbinates by performing this Konkotomy . I have no left concha
and a small part of the right concha. I know there are no treatments and I have
to live with it.
I just want to be
recognized by ENT specialists who confirm that I suffer from Empty Nose
Syndrome. Here, too, it is a struggle. For the past three years I have been
fighting to get this diagnosis and this written acknowledgment from ENT
specialists. But no, they just state that my nose is too open! It is very
difficult to be recognized by the medical community, especially when suffering
from an iatrogenic disease (caused by endonasal surgery).
Absence of recognition even from those close to
me and within my professional life: no one wants to understand, no one is
interested in Empty Nose Syndrome. A silent suffering that made me drown in
alcohol in 2011, to numb my burning sensations in my nose and this constant
pain…
Today I have
understood that it was not the solution and I have been sober for five years, I
have risen and now I want to shout out that I suffer from Empty Nose Syndrome,
the cause of this mutilating surgery called Konkotomy. Let's fight to finally
be recognized. / Francois M.
________________________________________________________
Sam's
testimony (France) victim of Empty Nose Syndrome
October
6, 2017, Written by SNVPublished in #Testimonies
I have undergone two
endonasal surgeries for an allergic rhinitis problem. I had basically no
problems before and lived life to the fullest, but I, like many other victims,
trusted an ENT surgeon who ruined my life and left me incapacitated. I now have
severe breathing problems and I am testifying today to warn others of the
dangers of these devastating surgeries.
This surgeon promised
that the operation would change my life. He performed the operation without
first conducting allergy tests or other examinations. I just had a harmless
x-ray which noted "a subtle mucosal thickening".
On July 4, 2016, I
underwent a rhinoseptoplasty, a total ethmoidectomy, a mid-meatotomy, and an
inferior radiofrequency turbinoplasty. The surgeon removed my medial turbinates
without my consent and without mentioning it in the surgery report.
Rhinoseptoplasty
: Surgery to correct the shape of the nose and/or the nasal septum
(septum).
Total
ethmoidectomy : Removal of all parts of the ethmoid bony structure located
at the eye socket.
Middle
meaatotomy : Surgery that widens the medial part of the nasal passages to
improve air flow.
Inferior
turbinoplasty with radiofrequency : Reshaping of the lower turbinates using
radiofrequency energy to reduce their size.
I bled for over a month, and after the post-op
plates were removed, I immediately felt something was wrong. My breathing
became strange, and since then I hardly sleep at all, suffer from insomnia, and
postnasal secretions choke me non-stop. I can't cheat anymore. I experience
constant fatigue, as well as nasal and sinus-related pain.
I returned to the
surgeon for clarification, and he said everything was normal and that it was
synechiae (tissue adhesions/post-operative sequelae) that were causing my
symptoms. I believed him because I trusted him.
At the same time, I
consulted another ENT doctor who gave the same diagnosis and sent me to a
pulmonologist for several tests, including a polygraph (sleep study) which
revealed thirty-five sleep apneas. The pulmonologist confirmed that my
problem was ear-nose-throat-related.
The more days passed, the faster my condition
deteriorated. I tried to
forget it as best I could by spending a few months in the mountains. I
underwent two spa treatments, without results. The only thing that relieves
me is a steam bath.
Five months later, my condition had worsened
further. I returned to Paris and went back to the ENT doctor who seemed
troubled (tenth visit), and explained that I was getting worse. He prescribed me Rhinomaxil and washes and assured
me that everything would be fine after the operation.
In the meantime I
consulted five ENT doctors in Paris who all assured me that everything was
normal and without exception told me to return to the surgeon who had operated
on me and not to come back to them . I therefore made an appointment with my
general practitioner and explained my sufferings after the operation. He did a
scan of the sinuses which revealed chronic sinusitis in the ethmoid and frontal
sinuses, a total medial conchotomy of the middle turbinates, and some fractures
of the nasal bones themselves.
The radiologist exclaimed, "Who did
this?" I replied, "My surgeon."
And there I was
shocked. I went on the internet and searched for keywords: turbinotomy,
turbinoplasty and found testimonials about Empty Nose Syndrome.
I returned to the
surgeon with the scan and asked for explanations. I said, "Why did you do
this to me? I trusted you and you have ruined my life." He replied:
"Empty Nose Syndrome doesn't exist anymore, it was in the 1970s and 1980s."
According to him, it is impossible to develop Empty Nose Syndrome from a
conchotomy of the middle turbinates or from a radiofrequency treatment.
He claimed my problem
was due to synechiae, two in the right nostril and one in the left. He
scheduled surgery a month later to cut out the turbinoseptal synechia and said
everything would be fine after the surgery. I trusted him.
On April 24, 2017, I underwent a second
operation: the result was disastrous. I was in the recovery room for five hours
and had a lot of bleeding; the sphenopalatine artery was damaged during
surgery. The nurse had to call
several times the surgeon who had left the clinic and inform him that he had to
return urgently. The surgeon came back at 8 p.m.
I underwent a second
anesthesia for bilateral coagulation of the sphenopalatine artery. Post-operative
complications were "ten times worse". Since then I have had severe
frontal pains, can hardly stand up, suffer from dizziness, a chronic cough that
chokes me even when I breathe through my mouth, an extreme thirst that I didn't
have before, I can no longer breathe through my nose or sleep. Blood tests
confirmed that my hemoglobin level had dropped by 5 points.
I later learned after
receiving my surgery report that the otolaryngologist had performed a
re-operation of ethmoidectomy, sphenodotomy and bilateral middle meatotomy
without my consent.
Since then, my condition continues to deteriorate. I hardly go out anymore, see no one and am a shadow of myself. Sometimes I pray not to live, the pain is unbearable. Sam
__________________________________________________________
Testimony
of Alexandre (Mexico) 23 August 2017
After a total removal of one lower concha and
two-thirds of the other in 2002, I experienced chronic sinusitis, difficulty
breathing through the nose (air did not pass or was insufficient), burning in
the nose and sore throat with cold or physical exertion, great fatigue, dark
circles under the eyes, hoarse voice and antibiotics six times a year to fight
respiratory infections.
I often got out of breath even on longer
sentences and had to take breaks to recover. I felt so bad that I decided to have an operation as
I described in my post, suggested by a surgeon in Mexico. I needed to do
something and this surgery seemed the most logical to me. I am an engineer
and approached the problem scientifically after reading up on the subject.
The operation
involved taking part of the parietal bone (skull), shaping it into two rods and
inserting it under the nasal mucosa through an incision above the upper lip.
This would fill some of the voids in the nasal cavities. The surgeon also
placed great emphasis on giving the rods an aerodynamic profile to allow air to
flow freely, like an airplane wing, and to avoid turbulence.
I also had several
fractures in my nasal septum that were an "S" shape, with corners
where air didn't circulate and where infections collected. The surgeon
"corrected" the nasal septum.
Since the sinus outlets
were blocked and the sinuses were not draining, the surgeon opened them and
suctioned everything out. After the operation, he said the cavities were filled
with it.
Today, a year and a
half after the operation, I feel much better. I would say that the problem of
Empty Nose Syndrome is largely solved. I feel the air passing through one or
the other nostril. The feeling is neither unpleasant nor pleasant, but a normal
air flow.
Before the operation,
there was always an obstacle, a sound, a discomfort or something abnormal. Now
I generally sleep very well, have much less dark circles under my eyes, less
trouble communicating, haven't had a sinus infection and haven't taken
antibiotics in a year and a half.
Not everything is
perfect, of course: I often have thick secretions in my throat and have to spit
once or twice a day on average. But my voice is not seriously affected. And
about every other month I still get a cold with symptoms like sore throat,
cough, stuffy nose and thick discharge, which takes a week to clear up. It
often seems to coincide with a colleague at work also falling ill.
I treat this without
antibiotics, with an over the counter antiviral drug, throat lozenges and a
hypertonic solution in the nose in very small doses to avoid bleeding. During
these sick days I usually sleep with a sticker to keep the nostrils open and in
a semi-recumbent position in a rocking chair, as I often did before surgery.
And strangely enough,
I no longer feel the allergy symptoms that I often had before: hay fever, runny
nose, itchy eyes… all these have disappeared.
A year and a half after the operation, I consider it a success. I hope it continues like this and maybe I can even boost my immune system so I don't get a cold every two months. My message here is that there are solutions to improve the condition after a turbinotomy. If it's not by using the parietal bone, you can also use the iliac bone or articular cartilage, as I've read. And maybe one day surgeons will agree on a definitive solution that can also regenerate the nasal mucosa. I wish you all the best and hope this testimony is helpful.
Sincerely, Alexandre
G.
__________________________________________________________
Testimonial
from Yann (France) 29
May 2017
Hello, My name is
Yann, I am 36 years old, and I will tell you my story about a laser
cauterization of the nose performed in February 2016 in Toulouse with Dr. L.
Before this ambulatory surgery, I had a
fulfilling life both family-wise and professionally. I participated in marathons and triathlons. I
breathed in joy of life, especially since in 2015 I had married the woman of my
life and had just received my degree as an accountant.
At the end of 2015 I
decided to consult an ENT specialist in Tarbes due to some snoring and quite
frequent sinus infections. He recommended that I see the most experienced ENT
specialist in Toulouse.
After this meeting,
the professor informed me that my case was suitable for laser cauterization of
the nose. During the conversation, looking him straight in the eye, I told him
that if there was any risk with this surgery, I would prefer not to have it
done (as I had previously looked up the risks of Empty Nose Syndrome online).
He assured me there was no risk, apart from
possibly some minor post-operative bleeding. Having confidence in the medical
profession and advanced medicine in France, I felt at ease and a meeting with
Dr. L. was therefore booked in for the beginning of February 2016. The day of
the operation was hell, I was in terrible pain and was sweating all over. Afterwards, the doctor prescribed me a month's
treatment (Dérinox, nasal rinse).
Then hell began. I couldn't breathe without
Dérinox, I barely had any sleep for a month despite an excellent lifestyle. I felt suffocated at home, I no longer felt the
flow of air through my nostrils, I was dizzy, nauseous and cried from
exhaustion.
The summer of 2016
was disastrous, with frequent awakenings, sleep disturbances (which I
had never experienced before), exhaustion, I could no longer feel the airflow
and I was suffocating day and night. My professional activities became very
difficult to manage, especially with my frequent travels.
I decided to make an
appointment with the professor again in September 2016, who had said that there
were no risks with the laser cauterization.
In his report he
wrote "Mr is breathing better" because there is more air flow after
the cauterization. It was the complete opposite of what I had told him and
which he denied hearing, let alone writing.
I decided to take
steps to help myself breathe and to remain calm during periods of suffocation
and exhaustion.
Since September 2016 I have been attending
group yoga, breathing osteopathy, sophrology and homeopathy.
At the beginning of
2017 I decided to see an independent ENT specialist in Tarbes again. After
examining my nasal mucous membranes, he wrote:
"You have desiccated, atrophied nasal
membranes. Your nerves and autonomic nervous system have been affected, causing
all the symptoms described (no longer feeling the flow of air, suffocation, dry
nose, dry eyes, sleep disturbance, fatigue, pain behind the head and around the
eyes, frequent awakenings , dizziness, stress, tears)." He also wrote that
I exhibited all the factors for Empty Nose Syndrome and that unfortunately there is nothing to be done,
and that I would not come back to him as he could not do anything for many
years in France.
Since then, my suffering continues and it also
affects my loved ones (and God knows how grateful I am that they are there: my
parents, my beloved wife). I
also meet great people on the Empty Nose Syndrome forum on Facebook, we help
each other continue our fight. Periods of extreme heat and very low humidity
and non-recovery nights have become hell . Every day and night I plan how
to combine my work life and my travels with my illness. I feel like a
zombie, like I'm just surviving.
At the end of May
2017, I made an appointment at the Aqua Klinik in Germany to try to repair
myself with their treatment based on stem cells, so that my mucous membranes
burned by the nasal cauterization will return to their pre-surgery function. I
am therefore scheduled to go to Germany to undergo treatment Ref 3 from 4 to 6
September 2017.
Meanwhile, I will
undergo a thermal cure in Bagnères de Bigorre for three weeks in July 2017.
My situation scares
me, but I continue to fight until my last breath for me and my loved ones in
the hope that Aqua Klinik can save me from this hell.
Do not destroy your
life and that of your relatives. Consult several ENT specialists before
undergoing a laser cauterization of the nose. / Yann
_______________________________________________________
Story
by Alisson T. (France) January 20, 2017, Written by SNV
Hello everyone, I am 24 years old and suffer
from Empty Nose Syndrome. I wanted to share my journey as a victim... Here is
my testimony.
At the age of 17, I
started getting sinus infections once a month: the headaches were then rare and
tolerable, and my nose still had moisture. Over time my sinus infections became
more and more frequent, I was constantly on antibiotics and the headaches got
worse. I therefore decided to consult an ear-nose-throat (ENT) specialist,
who suggested a septoplasty because I had a crooked nasal septum.
2013
I was 21 years old
when I had the operation. The three weeks after the operation I was in a lot of
pain and couldn't breathe (lots of blood clots, terrible headache), but I
patiently thought that it was normal post-operative discomfort... Three
months later I felt much better, I could finally breathe properly and the
headaches had disappeared. For a month everything went well... Unfortunately
this improvement was short lived, my symptoms returned and the pain got worse.
I returned to the ENT specialist who assured me everything was normal.
2014
A year later: no improvement, my condition
worsens: I no longer sleep, I have constant headaches and nasal problems. To improve my symptoms, the ENT specialist suggests
a partial conchotomy of the lower turbinates, explains that more space is
needed in the nose because it is too narrow, and reassures me to make me feel
safe that this operation is harmless today! I therefore accepted this
operation, but in retrospect I believe he sold me a dream!!!
And now my suffering begins: I no longer sleep,
suffocate when I sleep, my nose is dry, full of scabs and no longer heals. I
suffer when I'm outside, whether it's cold or hot... I can't hide anymore, the
headache is unbearable, I have no smell and the taste of food has changed!
(Morale at zero and mood at rock bottom!) I also have to deal with the
incomprehension of my relatives, doctors and ENT specialists.
I go from ENT
specialist to ENT specialist. Total denial: no specialist confirms Empty Nose Syndrome,
they just "round the subject"! The only thing they diagnose is:
"Nasal sprays! Live with these multiple disabling pains and stop thinking
about them!" Outrageous! My ENT specialist categorically denies
everything...
August 2016
I am told that I suffer from sleep apnea, that
my lungs are "tired" because the air coming in is no longer filtered,
I am only 24 years old….
A stomatologist (oral
health specialist) finally confirms Empty Nose Syndrome. His report states, and
I quote, that I "have Empty Nose Syndrome as a result of probably overly
aggressive procedures in both nasal cavities, leading to a sense of absence of
airflow through the nose due to the absence of turbinates... Unfortunately
there is no surgical solution to improve this problem…”. This specialist said I
would never get my sense of smell back, which I confirm (I don't have it
anymore or very rarely, only with very strong smells...).
As a result, I plan
to take legal action with a lawyer to defend myself…
Currently, I have found a treatment with aloe vera, combined with propolis, which relieves my headaches and infections significantly, but it will never replace my old nose…Alisson T.
________________________________________________________
Testimony
of Stéphanie (Belgium) January 9, 2017
My name is Stéphanie,
I am 26 years old and come from Belgium. I have been asthmatic and allergic
since early childhood. I had throat surgery at the age of 4.
I want to tell you my
story, or rather the nightmare I have been living for the last 3 months after
my endonasal surgery. During my teenage years I always had a stuffy nose and
nose drops didn't help (severe allergic rhinitis to pollen, mold, mites and
animal hair).
2015:
My GP sends me to an
ENT specialist who prescribes cortisone based nasal drops. Despite this, my
nose remains constantly blocked.
2016:
Seeing no improvement
in my condition, I am going back to the ENT specialist. He suggests a
septoplasty to correct my nasal septum as well as a radiofrequency conchotomy
on the lower turbinates. (My nostrils were enlarged due to the allergic
rhinitis.) The surgery is scheduled, and I had a gut feeling not to go through
with it. I had surgery on October 10th. Everything went well (I didn't have
too much pain but a lot of bleeding), but two weeks later my suffering started:
I wake up almost suffocating (lack of air, suffocation, dyspnea and sleep
apnea). I wondered what happened to me. I search online and find
information about Empty Nose Syndrome and quickly make the connection to my
symptoms and pains.
I return to the
ear-nose-throat specialist who operated on me and tell about what I'm
experiencing. He replies that it is impossible to have Empty Nose Syndrome with
radio frequency because I still have my turbinates. I leave, misunderstood,
disappointed and confused... My loved ones do not understand what is happening
to me and say it is imagination (imaginary illness).
I've been to the ER
twice because I felt so bad, but they couldn't find anything and just said it
was anxiety and it would go away. Even the first pulmonologist said it was
nothing serious.
December 2016:
I consult another
pulmonologist who listens to me and performs the first lung tests which turn
out to be good. I will soon have a work test with a cardiologist and a
polysomnography (sleep study).
My current symptoms: dyspnea, shortness of
breath on the slightest exertion, extreme fatigue, suffocation during the
night, sleep apnea, dry nose, dry throat, chronic insomnia (I almost have to
sleep sitting up), depression, anxiety, and yellowish coughs.
I have no income and live with my parents who
are 70 years old and have very high heat (the room temperature is 24 degrees,
which aggravates my symptoms. They do not understand and do not accept my
illness.
I don't know if I
will be recognized by radio frequency. It's already difficult to get a
diagnosis of Empty Nose Syndrome after a full conchotomy (removal of the
lower and/or middle turbinates), so it's even more complicated for RF... Sure,
my lower turbinates are still there and haven't been taken away, but what they
avoid telling me is that after this treatment the turbinates no longer work,
which leads to these symptoms and the extensive suffering.
At the moment I feel really unable to work because I have bad breathing and am very tired and can't stand temperature changes. The only person I can count on is my best friend who I hug tight. I am worried about the future…Stephanie, Belgium.
_______________________________________________________
Aurélien's
testimony (France)
November
5, 2016
When I was 16, after
being hit, my nasal septum became deviated. It bothered me a bit for a few
years, but not enough for me to consider surgery.
At the age of 22, I
began to experience that my nasal breathing was difficult due to the deviated
nasal septum. I made an appointment with an otolaryngologist to find a solution
to this increasingly noticeable problem.
He immediately
suggested an operation on the nasal septum to restore it to its proper
position. I asked if there was no other option before we considered surgery. He
replied that there was no other solution and that it was the only method to
regain "natural" nasal breathing.
I finally agreed to
the surgery, believing that the doctor would do a good job and that he was used
to it.
July 2013
I underwent a septoplasty with a lower
conchotomy. A few days after the braces were removed, I immediately felt
something was wrong.
First of all, I noticed that my nasal septum
was not properly restored. My right nostril was mostly blocked in the upper
part and above all I could no longer feel the air I was breathing.
In the following days I experienced more and
more this emptiness, this unpleasant feeling of not breathing and that my
breathing was no longer automatic; I had to almost think about breathing.
My sleep became unbearable: because my
breathing no longer worked as it should, I often woke up with a jolt because I
stopped breathing.
I looked up my symptoms online and quickly
linked them to Empty Nose Syndrome. A X-ray a few days later confirmed the
diagnosis.
I returned to the
"butcher" who had operated on me, but the surgeon would not hear of
it... I then consulted another ENT doctor in my region who explained that
"he had done the same thing and had cut out the same a lot... According to
him I should be breathing well now because the passage is clear...".
Tired of these doctors, I made an appointment
with "the supposedly best professor in Lyon". He suggested I take my
middle turbinates and moved to the location of my lower turbinates to fill the
lower part of the nasal cavity. For him, the middle nostrils were
unnecessary!".
I of course declined
and quickly left his office. In the meantime, I tried sleeping with a CPAP
machine to better feel the air and avoid breathing pauses, but the machine only
helped me a little, yet I continued to use it.
February 2014
I underwent a PRP + PRL injection at Dr. Donde,
but I didn't notice any improvement. I then conducted a sleep study which
showed 20 breath pauses per hour and 40 microwakes per hour….
July 2015
I traveled to the US
to Columbus to see Dr. Das for injections with Acell + PRP, which were intended
to restore some volume and functionality to my removed turbinates. I underwent
5 injections over a month.
Over two weeks my
breathing and symptoms improved, but gradually the volume disappeared and I was
back to square one.
At the time of
writing, August 2016, the CPAP machine has become ineffective; I stop breathing
even with the machine. I believe it is due to "my breathing control"
not working properly and to the lack of nasal sensation.
In order to sleep, I have to cover my nose and
breathe through my mouth. That way I feel the air a little better, but
breathing only through the mouth is not a solution... I sleep very badly and
often stop breathing.
During the day I am always very tired and I
have great problems with memory, concentration and thinking due to the very
poor quality of my sleep.
December 2015
Because of this devastating surgery, these
symptoms and constant pain, I have lost my job. I was a mechanical draftsman in
an engineering office but I forgot everything… I was and am no longer competent
enough to perform my profession correctly.
During the day I feel suffocated and my mucous membrane is very dry. I am desperate… Aurélie
___________________________________________________________
Mohamed
D testimony (France)
17
October 2016
My name is Mohamed, I am 39 years old and
suffer from Empty Nose Syndrome, a serious and irreversible iatrogenic disease,
as there is no known treatment option today.
Here is my testimony
which I hope will enlighten the danger of lower turbinotomy, an operation often
performed for swelling of the lower turbinates due to chronic sinus infections
or allergies.
I believe that this devastating operation, by
depriving me of this essential organ, has reduced my life to one of disability,
immeasurable pain and is leading me inevitably towards a gradual deterioration
of my health. Before all this I was an athlete, worked and had a social life.
Today I'm no longer alive, I'm surviving...
2002
I complained of chronic
sinus infections and allergies, and the otolaryngologist I consulted concluded
that I had hypertrophy of the inferior turbinates. At the age of 25 I was
operated on for a partial bilateral lower conchotomy (amputation of the lower
turbinates) . "Partial" is what the surgery report says, but on
reflection, the later x-rays and the events that followed, I highly doubt it
was really only partial...
Within 3 to 6 months after surgery, my health
deteriorated. I, who loved to run, could no longer do it.
Shortness of breath, recurring headaches,
fatigue, chronic fatigue, non-restorative sleep and continuous micro awakenings
appeared... I was still working, but it was getting difficult. I went from
consultation to consultation: I wanted to understand what was happening to me,
but no one could put into words my pain: "They say that I have nothing and
that it is in my head."
Other symptoms soon began to appear: nasal
congestion and dryness, crusting, back secretions, loss of taste and smell,
hypersensitivity to temperatures and increased pain in the sinuses, face and
head. All this literally exhausted me.
I could no longer work. I stopped going out,
withdrew, became anxious and sad. I was no more than a shadow of my former
self. My social and family life no longer existed.
2010
I consulted a new ENT
doctor who diagnosed Empty Nose Syndrome and wrote:
"The examination shows an empty right
nasal cavity with an absence of the inferior turbinate..."
He proposed a
septoplasty with reduction of the nasal cavities by implantation of Eyries
rods. (The rods would fill the void in the nasal cavities and prevent too much
air from entering the nose.)
I accepted this
second surgery that was not covered by Social Security, hoping to improve my
poor health.
For a month I felt
that I was alive again, the air no longer forced its way into my nose, I
regained my taste and the many pains disappeared. But soon recurrent infections
and previous symptoms returned.
2011
My health deteriorated so much that I underwent
a third operation for "abdominal fat injection to supplement the
implantation of the Eyries rods". The surgical outcome was disastrous; I
could no longer breathe at all.
Facial and sinus pains, headaches intensified
with the previously mentioned symptoms, gave me no rest and forced me to lie
still for two months, I could not do anything. Day and night I suffered and
could no longer sleep.
The infections were
increasing, I wanted to remove the Eyries rods! It led to a fourth operation to
remove the Eyries rods which was of no use…
With no independence, I moved back in with my
parents and mostly lay down because the slightest activity, even eating,
exhausted me…
For two years I lived with a PPC, which helped me to breathe somewhat, I consulted a pulmonologist who diagnosed rale bronchiale, cognitive disorders, drowsiness, disturbed and restorative sleep and arranged a polygraph.
Ralle bronchiale (also called bronchial rattle or ronki) is a medical term that describes a certain type of sound that can be heard when auscultating the lungs with a stethoscope. This sound occurs when air passes through narrowed or fluid-filled airways, causing a rasping or crackling sound.
Ralle bronchiale is
often associated with various lung and respiratory diseases, such as:
- Chronic bronchitis
- Asthma
- COPD (chronic obstructive pulmonary disease)
- Lung inflammation (pneumonia)
I also underwent a
functional examination which confirmed severe nasal congestion, so I was
prescribed breathing and lung exercises by a physiotherapist and psychological
treatment at a center which proved to be completely ineffective…
To top off the misery, stomach problems arose, and I underwent three fibroscopies and a gastric biopsy that diagnosed severe ulcerative esophagitis with an ulcer and gastroesophageal reflux problems .
2012, 2013 and 2015
I underwent three
more operations to try to improve my situation somewhat:
- A septoplasty with collagen implants that was
not covered by Social Security.
- An ear cartilage transplant to fill the right
nasal cavity.
- A Cottle septoplasty with a cartilage implant
that was not crushed. These three interventions were ineffective…
Bottom line, I can no longer breathe and my
nose is completely "closed". The constant back secretion, sinus pain,
facial pain and recurring headaches never leave me... I only sleep
intermittently.
The dryness of the nose, my hypersensitivity to
humidity, temperature variations, the air violently entering my nasal cavities
and recurring infections make my existence a real hell...
The smallest activity requires a huge effort.
Bronchial and stomach problems have gradually arisen... I have very little
independence and see a general deterioration of my health over time.
I no longer see anyone, conversations tire me.
I can no longer concentrate on anything and memory loss is common... I am
constantly exhausted, also can't drive and even shopping has become
problematic. I can therefore speak of a serious disability related to Empty
Nose Syndrome.
January 2016
I saw the surgeon
again and his diagnosis was as follows: "Sir, there is nothing more we can
do for you, do not operate again."
I conclude with the
report from the Maison Départementale des Handicapés which sums things up well:
"Your statements testify to a great mental pain resulting from a surgical operation performed in 2002, the consequences of which are expressed through a variety of physical and mental symptoms that are particularly disabling throughout your everyday life in a way that seems to be increasing. Given your current health as does not allow you to practice any profession, we submit a request for recognition as disabled for work and disabled as an adult." Mohamed D.
____________________________________________________________
Testimony
from FL (France) 16 October 2016
Story from FL (France)
October 16, 2016, written by SNVP, published in #Témoignages
My name is FL, I am 31 years old and was 23
when I underwent this devastating endonasal surgery. At the time, I was a final
year student on my way to a brilliant career…
In October 2008
I began to suffer
from severe nasal congestion and chronic sinusitis. I couldn't breathe through
my nose, which led to disturbed sleep and chronic frontal headaches. I
consulted my GP who ordered an MRI, as he thought it might be a neurological
problem.
The examination
showed that my sinuses were completely blocked. My doctor then sent me to an
ENT specialist who suggested a course of antihistamines for several months and
talked about surgery to open up the blocked sinuses and thereby resolve the
nasal obstruction by fully opening up the nose...
Seeing no improvement
in my symptoms (severe pressure in the head, insomnia and nasal congestion), I
returned to the specialist's office a month later. After an endonasal
examination, he again spoke about the operation.
In retrospect, I can say that he sold me this
surgery, presented it as simple, banal, without risk or side effects, and also
emphasized that he performs several such surgeries every week. The specialist also did not explain how he would
carry out the operation, only that it would be done endonasally... I trusted
him and accepted the procedure.
In November 2008
I underwent a: bilateral
ethmoidectomy with dislocation of the medial turbinates, a bilateral conchotomy
of the inferior turbinates where the head and the anterior third of the
turbinates were removed, this bilaterally. In addition, a septoplasty .
I would like to point
out that the operation of the middle turbinates which was also performed at the
time of the procedure was never mentioned in my operative report. During the
anesthesia, before the operation, I woke up and stayed in the recovery room for
five hours longer than normal...
One question is
bothering me, how is it possible to perform five endonasal operations at once
for a nasal problem and a chronic sinusitis?
I stayed in the
hospital for forty-eight hours and saw the surgeon again two weeks later to
have the bandages removed.
At the exam, the
specialist said "everything looked normal and well opened", warned me
that I would have scabies that would go away with time and that everything
would gradually settle down. The surgeon did not set up another appointment.
The abundant crusts
decreased with the nasal irrigations. After a week and a half I noticed that
I wasn't breathing properly: I always had one nostril blocked, but never both
at the same time, the headache was still there and I had tinnitus.
I returned to the specialist, who was irritated
by my visit. He did another endonasal examination and said that "it was well opened, that he could do no
more, that the air would circulate and the body would adapt..."
I waited, tried to convince myself that
everything would be fine, but after two months, with no improvement, I had
panic attacks and felt and understood that it was abnormal and that my body
was not reacting as it should.
With the operation I had to stop my
studies, it was impossible to continue with these constant pains and symptoms,
and anxiety and concentration problems also appeared...
Gradually I withdrew and encountered
incomprehension from my loved ones. I lost my friends and was no longer seen by
anyone except my mother, who understood and helped me. I was completely
isolated…
Two months later, I
consulted a second specialist who prescribed another CT scan. I told them I had
bad breath and listed all my symptoms.
The CT scan showed that my Eustachian tube was
infected and that my sinuses were less dense than before surgery.
The specialist
suggested another surgery and said it was a mechanical problem... I declined
this surgery.
Two weeks later I
made an appointment with a third specialist, an honest and retired doctor.
Of course, he did not
criticize his colleague for ethical reasons, but after seeing the CT scan, he
was surprised and said: " It was a big operation you underwent.
Unfortunately, there is nothing more to do, if you try something, it will only
make your situation worse... You have to accept living like this."
He prescribed a thermal cure. At the verdict I
burst into tears: I was totally devastated. Depression set in and I lost my
self-confidence. I spent three years locked in my room, doing nothing, refusing
to go out, seeing no one, with my constant and numerous symptoms and pains. I
also had dizziness, disturbed sleep and only slept three or four hours a night,
which exhausted me.
My nose was dry with occasional scabs and
infected post-nasal secretions, as well as a sensitivity to temperature
variations, which was disabling when you live like I do in the mountains.
I found it difficult to tolerate the cold and
dry air and hiking at high altitudes with atmospheric pressure variations
became impossible as it caused dizziness and intense pressure in the head...
At the time, I didn't know I was suffering from
Empty Nose Syndrome. I
discovered it later when I searched for my symptoms online. I accidentally
stumbled upon the American Empty Nose Syndrome forum and finally understood
what I was suffering from. Shortly afterwards, I went to my GP and said I had
symptoms of Empty Nose Syndrome, but he didn't know this disease either.
Gradually I decided
to take hold of my life, I was tired of living like this, it became a long
psychological struggle…
The problem with this disease is that it is
impossible to predict how one will feel the next day, which creates a feeling
of powerlessness, anger and frustration, and it is difficult to accept...
Unlike healthy people, we always have to fight and do extra efforts...
I learned to adapt
and cope with the disease, drawing resources from myself to cope. When a crisis
came, instead of being depressed and suffering, I took my suffering with
patience and rested. I completely avoided the destructive stress that
exacerbates the symptoms of Empty Nose Syndrome…
Of course there were
days with and without, I suffered and was depressed, but by becoming aware of
this reality I did things based on the vagaries of the disease and step by step
I regained some self-confidence and regained the joy of life. I even started a
love affair.
There were small,
progressive victories, things that seem trivial to healthy people: shopping,
going for walks, meeting people, and I even managed to work for a month as a
delivery driver with 8-hour shifts, starting very early. It was a very physical
job that required tremendous mental and physical effort.
I had to drive (which
has become complicated with Empty Nose Syndrome, especially when you have to do
longer trips because there is a risk of falling asleep and feeling sick in an
enclosed space). It was very difficult but I managed it and it was an
achievement for me and a revenge on the disease, which showed that with a
strong will I could also do and succeed, even with this terrible disease. I
regained my confidence and thought that maybe I could work full-time like
everyone else, and I continued with a 6-month course that will be finished
soon. I've had to fight extra hard, because it's physically demanding and the
days are packed... I've had to take breaks and some days I was absent...
Today I see that it is impossible for me to
work normally with Empty Nose Syndrome and to persevere for a longer period,
even with the best will in the world. Some time ago I would have refused to
admit that at the age of 31 I was disabled, but today I have come to terms with
this disabling condition. I have therefore started a process to have my
disability recognized at the Maison Départementale des Handicapés, because it
is impossible for me to work like everyone else. I hope this will prevent me
from living in poverty.
_______________________________________________________
Testimonial
from Eric (France)
October
4, 2016
I had surgery for a deviation in the nasal septum. I
underwent a septoplasty with a radical reduction of the concha/turbinates.
At the time I was not familiar with these terms.
The two months following the operation were
very difficult. The following symptoms occurred: headache, fatigue and crusting
(normal) . During this period,
I visited my ear, nose and throat (ENT) doctor twice and received various
treatments that he said would quickly end my symptoms, but it didn't...
I've always been sporty and have been cycling
for years, and I used to participate in one or two cycling races a year (like
"Marmotte", "Ardéchoise", for those who know them).
After the operation, I wanted to start training
again, but I immediately realized that my body no longer followed: 4 out of 5
training sessions turned into agony. At first I made no connection to the
operation. As I am sensitive to
high temperatures, I thought these symptoms were due to the extremely hot
summer of 2015 or that I had been inactive for two months.
Year 2015: The symptoms I described earlier worsened and
new ones appeared: breathing difficulties and inability to resume cycling. For
me there was no doubt: the connection with the operation was obvious. I
went back to my ENT specialist to discuss this, but according to him, my symptoms
had nothing to do with the surgery, which he said with the confidence that some
doctors can have...
I then started
searching the internet using terms like "septoplasty, conchotomy,
headache, etc." I know you have to be careful with the internet because
"a small cut on your finger can quickly turn into cancer!"
I came across the description of Empty Nose
Syndrome. As I read, I immediately understood what I was suffering from…
It was both a relief
because I finally had an explanation for my suffering, but at the same time I
was completely in despair. My GP, who I have been seeing regularly since the
surgery, confirmed this diagnosis and at the same time informed me that this
condition cannot be cured...
I then went back to
my ENT specialist for an explanation, and that's when I realized that he knew
very well what I had from the beginning, but that he had lied to me with
incredible confidence and denied the obvious, and from the beginning claimed
that I had a "huge polyp" that he said would need to be removed.
In this context, I
would like to point out that neither the preoperative X-ray examination nor the
postoperative report mentioned any polyp...
I therefore suspected
that the polyp was an excuse to justify this radical conchotomy, this
amputation of my entire lower turbinates!
Little confession:
when I broached the delicate subject of Empty Nose Syndrome with my ENT
specialist, he replied that in his entire career he had only encountered a
single case of ENS, and that patient was, in his words, "schizophrenic."
.. Dear readers, victims of ENS, you can add schizophrenia to your list of
symptoms...
Today I underwent a
whole series of tests, as you all have probably done or will do, that ENT
doctors are happy to prescribe: sleep test, MRI, scan, neurological exam,
cardiologist, pulmonologist and even a pain clinic, which in itself deserves
its own story, but it's not worth it! If there is a problem with blood
pressure, lungs, etc. detected, the symptom is treated, but no connection with
ENS will be claimed or acknowledged.
Added to this is another suffering that ENS
victims face: denial and incomprehension from others. Because it is an
invisible disease, people not only do not realize our suffering, but also have
a tendency to think that we are making it up .
I mentioned my
passion for cycling to highlight how this disease literally drains us of energy
and renders us incapable of physical exertion, both on a personal and
professional level.
Before this operation, in 25 years of my
career, I had hardly been on sick leave, which I was lucky with, fortunately!
Since 2016, I have been on sick leave and that is unfortunately just the
beginning of a long series...
Before this operation, I planned to
participate in the "Tour du Mont Blanc", a bicycle race. Right now
I'm having a hard time just cycling around my little village...
I have a mortgage,
two small children, a professional situation that is in question because of
this endonasal procedure. I don't know what the future holds.
When I read the
testimonies of other ENS victims and see how much they agree, I do not
understand this denial by ENT doctors in the face of such an obvious reality. Eric
J. - October 2016
__________________________________________________________
Carole's
Testimony (Canada)
October
3, 2016
Many years ago, when
I was in my thirties, I often had a stuffy nose that was treated with nasal
drops.
My family doctor sent me to an ear nose and throat
doctor because I had a small septal deviation. He discovered that my turbinates
were a bit too large and decided to reduce them as well as straighten my nasal
septum. I asked him if this
operation could worsen my condition. He replied that my problem would improve
by 70%.
Year 1988
I underwent a septoturbinoplasty and a
bilateral cauterization (burning the turbinates) of the lower turbinates. After the tamponades were removed, I suffered
for five years with deep pain in several places, I was no longer alive, I just
existed.
I consulted a second
otolaryngologist who told me that they no longer operate on people with
vasomotor rhinitis and that a turbinotomy was comparable to a kidney operation.
Year 1989
I saw a third ENT doctor who diagnosed me with
atrophic rhinitis. At that time
there was no internet and no information about this operation. I was really
lonely, today it's different, people can look for information on social media.
After that I had a
period of relief for thirteen years, although I could not go out in winter
without a balaclava because my teeth and nose hurt, but I no longer suffered
from headaches.
I thought to myself that I never wanted to experience this cruelty again and that I would rather die. I would describe this operation as: "it's like being sentenced to a slow death."
Year 2006
The nightmare returned with terrible leg pain
(burning, stabbing pain in the middle nostrils, drawing, pain in the cheeks and
gums radiating to the eyes along with recurring headaches and sometimes numbness).
My nose stopped
working and where is so dry. It has undergone a radical change: the nostrils
play a decisive role. They filter, moisten and warm the air and are also the
guardians of the lungs.
They are precious
organs. They deserve respect because they provide us with well-being,
self-defense against dust, cold, heat, etc.
I had visited several otolaryngologists as my
condition worsened. Some treated me very badly, saying that "it was in my
head."
One of them inserted
a cotton ball into my nose and advised me to seek help for psychosomatic
problems. Another could not answer me, completely powerless before my pains,
because he was ignorant.
What professionalism!
I felt like nothing.
I knew from the beginning that my symptoms were
from the operation . I had lost a
lot of weight, undergone several examinations and seen many specialists (ENT,
psychologists, psychiatrists, specialists in psychosomatic disorders,
neurologists, acupuncturists, osteopaths, sinus examinations, MRI examinations,
consultations at pain clinics in Montreal and Laval ).
Year 2008
I bled for two
months. What had happened?
Year 2010
An otolaryngologist
diagnosed chronic neuralgia and another, atrophic rhinitis.
Year 2012
I suffered a central venous occlusion in the
retina of the right eye (OVCR), with a loss of vision of 90%. The attending physician informed me that it had
happened for no reason because I did not have high cholesterol or high blood
pressure.
I worry about my left
eye as I very often have sharp and crushing pains that come on suddenly.
"It's really the worst pain I've ever experienced and it's very
scary."
Year 2014
The last neurologist
told me that my pain was not neurological in nature, that it was not his area
of responsibility because I did not suffer from trigeminal neuralgia and that
my problem was related to facial neuralgia. (The report indicates that I have
chronic central pain as a result of endonasal surgery).
I've been waiting a
very long time for another consultation at the pain clinic, but I'm not
expecting a miracle solution...
Year 2015
I saw a final ENT
doctor who prescribed a scan, which indicated the presence of a cyst in the
left sinus and a small polyposis in the lower right turbinate caused by chronic
rhinitis.
I have lost 15 years of my life due to a
so-called "minimal" endonasal surgery that poisoned a large part of
my life . Previously I had
only a simple vasomotor rhinitis, and after this operation I suffer from
secondary atrophic rhinitis (degenerated mucous membrane) which causes chronic
rhinitis.
I hope that Empty Nose Syndrome, this
iatrogenic disease, is recognized and that a treatment is finally found to
relieve the victims who live in this daily hell. I hope that the ENT community becomes aware that failure
is possible after such surgery and that they admit their mistakes to avoid more
victims having their destinies ruined. (Health gives us joy in life and is our
greatest wealth).
For those who have to undergo a conchotomy, even a partial one, I advise you to think carefully and get a second opinion, because if you suffer these horrible sufferings, you will regret it deeply and be left to fend for yourself... Carole, Canada.
__________________________________________________________
Testimony
of Daniel (Belgium) 30 September 2016
Due to chronic sinus
infections, over thirty years ago I underwent external maxillary sinus surgery
using the CADWELL LUC technique (an operation that seems to no longer be
performed).
Over the years, my
sinus infections returned regularly. I was on antibiotics, anti-inflammatories,
and so on. The last severe sinus infection I had was in Canada, and I decided
to be a little more decisive this time.
On January 13, 2015,
I consulted my ear, nose and throat (ENT) doctor who had previously suggested
radiofrequency treatment of the sinuses (something I had always declined, but
given the recent sinusitis episode I finally agreed).
The doctor assured me
that I would breathe better afterwards and that I would have fewer sinus
infections. I asked if there were any risks and if any complications were
possible after the procedure.
The only answer I got
was this: "You might bleed a little and have a period of scabbing, I'll
prescribe you an antibiotic ointment, and then everything will be fine."
After the procedure,
I barely bled and got no scabs at all. I was problem free for a year.
In January 2016, my
episodes of scabbing and small bleeding began. Every time I visited the ENT
doctor, he prescribed an ointment for me.
Since then I have
periods where I don't have any problems, but other times I don't feel well. I
have stopped using the antibiotic and moisturizing ointments. Essential oil is
much more effective. The scabs and bleeding have disappeared.
I sleep poorly and wake up every three hours,
and my throat starts to hurt. From time to time I feel tiredness, pains and
aches between the eyes. I have also lost my sense of smell, which used to be
very strong, and even taste is affected!
If my condition becomes unbearable, it will be
impossible for me to live like this. I'm not there yet, but slowly but surely
I'm getting worse. I don't know what to think!
I don't know if I have Empty Nose Syndrome, but
I am increasingly worried about my situation: my fear is that my condition will
worsen.
Of course I have
visited another ENT doctor who examined me and said that everything was perfect
and well done and that I had absolutely nothing to worry about.
I've also gone
through my scan, both pre and post procedure, and my turbinates are there,
sure, but are they working?
I underwent a bilateral partial resection of
the inferior turbinates. I have never understood what the barnacles are for,
and I believe I was misinformed!
Furthermore, the ENT
doctor presented this as a routine procedure, performed very often. That's
right, I researched this with the medical advisors from the health insurance
companies, and the numbers are staggering! On the one hand, it felt reassuring
considering the large number of procedures performed.
Right now I'm not feeling well, but I know
there are those who have it worse than me, and I understand why some people get
upset or even want to give up. Daniel
W.
____________________________________________________________
Testimony
of Jonathan (France) 14 September 2016
My name is Jonathan.
In October 2013, I visited an ear, nose and throat (ENT) doctor due to
recurring pain on the left side of my face (orbital and cheekbone).
The doctor performed
an endoscopy which was normal on the right side, but impossible to do on the
left side because my nasal septum was completely crooked.
I want to point out
that everyone has a deviation in the nasal septum, but it does not normally
cause problems. What I do know, however, is that these operations, which are
performed frequently, often only finance the doctors' vacations.
I had a scan which
showed a cyst (a polyp-like growth caused by a thickening of the lining) in my
left sinus which was the cause of my pain, my very deviated nasal septum and a
very marked enlargement of the turbinate on the opposite side. (Which makes
sense, since the concha has increased in size to fill the significantly larger
space on the right side).
In November 2013 I underwent a left sided
meatotomy for polypectomy (removal of a large polyp on the left side),
septoplasty and lower right sided turbinectomy (removal of the right turbinate).
The surgeon explained
beforehand that it was like a "cleaning" and showed me "the big
blob" on the scan that represented my right nostril and said, "I'm
going to do some cleaning here!".
After the procedure,
when I woke up in my room, the surgeon confirmed that it was indeed a cyst (it
could have been something else...) and he clarified that he had "removed
the part of the bone that was interfering and that I would now breathe
better".
I didn't care too
much about it, I trusted him. I thought mostly about the pains I was in, rather
than my breathing…
That doctor has since
retired. I even called him one night when I couldn't sleep, after realizing
what I was suffering from, while waiting for my new x-ray. I wanted to know
more, as soon as possible. I then asked him if he had done a total removal? (At
the time I thought it was only a total removal that caused Empty Nose
Syndrome).
His reply was:
"No, it is forbidden! I have never removed the entire concha in my career
and I have always been careful to remove as little as possible." (It
proves that this operation is dangerous and that ENT doctors know about it!
Anyway, he knew, because he directly talked about atrophic rhinitis...).
After the operation,
the following symptoms gradually began to appear:
Frequent ENT infections, more or less constant
yellow persistent secretions from the right side, almost always completely
blocked right nostril, unlike before the operation, forcing me to use
decongestants to get air to pass through. (The nostril eventually began to open
slowly over two years).
On my latest scan the front two thirds of my
right concha is missing, (that is the head of the concha: the most important
part as it contains the sensory receptors, is in direct contact with the
inhaled air, regulates the volume of the concha which swells and shrinks
according to need and results in a nasal cycle and above all provides 50% of
the resistance that allows one to breathe effortlessly and unconsciously.
As my nose became less and less blocked, I thought
my condition was improving. Big mistake: that was the beginning of my
suffering, because until then it was still bearable…
I used the Neti pot
for nasal irrigation and it went more or less well, although I knew that
something was still not right, but that it would pass with time... But
unfortunately it didn't.
After this surgery my breathing has become
chaotic!
Every day I struggle through my days not being
able to talk about it with anyone because only those affected can understand…
Either I hyperventilate when my nose is too
open, or my nose is too closed and then I breathe badly. (Which is less
anxiety-inducing anyway).
The yellow and green slimy discharge on the
right side has turned to gray, strangely purulent scabs... (I notice that the
dryness in the right nostril gets worse in the winter and I have much less
scabs and foul odors in the summer).
When the right
nostril is too open, I feel the hole in my nose. (I have understood that it
corresponds to the removed part...) It took two years to get this feeling! It's
anxiety-inducing, as is "this feeling of nasal emptiness and too much air
passing...".
I had to tell my
story. If there are people, near Metz or elsewhere, who are in the same
situation, do not hesitate to contact me on 06 11 xxxxxx.
I am good at English
(especially in writing) and would also like to point out that I studied
medicine up to the second year in PCEM2. (Which still didn't stop me from being
"tricked", and then followed a different path.
Ironically, 10 years ago I did an internship in the ENT department where I was operated on and I even assisted in one of the operations... That's actually why I trusted him, just to say that I am well acquainted with medical terminology, but so are many of you because of the circumstances…Courage to you all. Jonathan
___________________________________________________________
Testimony
of Jesús Harley Jaimes Rodriguez
September
8, 2016
I have suffered from Empty Nose Syndrome for 5
years. My health problems started after a surgical operation on July 4, 2011.
No one believes or
thinks that I am sick, not even my family or my friends...
On 04/07/2011, as I
have just written, I underwent surgery at St Paul Hospital in Barcelona, Spain.
I underwent a septoplasty with partial removal of the lower turbinates. (Reasons:
deviation of the nasal septum, enlarged inferior turbinates and "ear
plugs").
At the hospital, the
ENT doctors assured me that there would be no problems or side effects after
this endonasal surgery. I trusted them, not understanding what was really
happening, and I signed the informed consent. After the operation, I was on
sick leave for 20 days due to aftercare.
Thank goodness they didn't remove my entire
lower turbinates! Luckily I have 50% of my turbinates left…
My symptoms started as soon as the "nasal
stuffing" was removed after the operation, that is, 20 days after the
aftercare: Dryness of the nose, inflammation of the remaining mucous membrane,
intense burning in the nose and severe pain when inhaling caused by cold or warm
air that is not filtered or humidified, rushing violently into my nose.
For 5 years I have had difficulty eating.
Since this surgery, it has become impossible for me to sleep through the night
and breathe normally. (My sleep is disturbed and not restorative). "It's
like I haven't slept all night..."
I wake up continuously every two to three
hours at night because of the dryness and thirst, and because I am no longer
breathing normally. I now have sleep apnea and my quality of life has
deteriorated.
I am 32 years old, my
name is Jesús Harley Jaimes Rodriguez, born on July 15, 1984 in San Antonio de
Táchira, Venezuela. I have lived in Spain for 11 years and after this operation
my situation and my life have become painful and difficult.
All this suffering because of Empty Nose
Syndrome, an iatrogenic disease caused by an unacceptable medical error... The
worst thing is that no one believes us, we who are victims of ENS. We are not
recognized and no one can help us or cure us…
Jesús Harley Jaimes
Rodriguez
___________________________________________________________
Turbinoplasty:
Nasal fracture (author unknown) link to blog
Ear, nose and throat
(ENT) doctors often perform a conchotomy, a procedure that hides a terrible
reality that the patient only discovers after the operation, when it is already
too late. It is hard to imagine that your life can be destroyed in such a
painful way.
The ENT doctor presents this operation as the
only solution to your problem: easy to perform, without any side effects. (After all, it is only a simple reduction of the
turbinates, their function will remain unchanged). But this is a lie, a serious
lie!
The turbinates have a
crucial function, as they filter the air that goes down to the lungs and
humidify it, as well as regulate temperatures such as cold and hot in your
nose.
Doctors usually claim
that by cutting away a small part of the turbinates, the airflow to the lungs
will increase and your breathing will improve significantly.
In most cases, a
conchotomy is performed in combination with a septoplasty. What they don't tell
you is that the bone and tissue being cut away is richly innervated and vascularized.
(The bivalves have sensitive, unique and very important nerve endings).
When the turbinates are amputated, this is
irreversible. The scars and consequences will remain forever, and it is easy to
understand that after this you will live in hell!
Sure, more air comes
in when you inhale because your nostrils are more open. Clinically, everything
is normal, and the examinations seem to be consistent with the expected result.
But the following symptoms appear immediately or a few months after the operation
and will never go away.
Intense cold in the nose:
Because the nasal
cavities are too open and the turbinates are amputated, unfiltered air enters
the nose, which can no longer be heated during the winter.
Loss of smell and taste:
The simple fact of
eating becomes greatly difficult. I have lost my sense of smell and taste, I
constantly have a foul smell and a bad taste in my mouth (the worst that can
exist!).
Poor sleep:
I sleep badly
because, no matter how much I'm tucked in, and even if the doors and windows
are closed, nothing can stop the cold from penetrating.
Runny nose:
I have never had a
runny nose before in my life, but after the surgery this problem occurred all
the time (when I woke up, when I ate, in air-conditioned environments, in cold climates...).
Violent, persistent headaches:
The intense feeling
of cold penetrating violently into my nose spreads all over my face and head. "It's
like I always had sinusitis". I then started to give up going out in
the evenings because there is always air conditioning in all public places…
Extreme dryness:
Gradually the nasal
flow decreased, but something much worse happened: the production of mucus
decreased dramatically due to my extremely dried out nose inside. This led to
real and constant suffering that was impossible to relieve, even by moistening
the nose with saline.
Burning sensation in the nose:
Another constant and
disabling problem. Since your nasal mucosa is extremely dry and moistening is
impossible, with every inhalation and exhalation it feels like "your nose
is on fire!".
Extreme thirst:
The dryness of the
fluids that lubricate your nose also affects your mouth, triggering an
uncontrollable thirst that neither water nor time can alleviate... "It's
like having broken glass in your mouth!". (The lips are white and
parched).
Dry eyes:
Like the throat, the
eyes are also dry because the tears are insufficient, so eye drops are required
to relieve and moisturize the eyes.
Pressure in the ears:
As air enters the
nasal cavity violently and the amputated turbinates can no longer balance this,
a strong constant pressure occurs in the head, especially in the ears. Sounds,
especially low frequencies, start to bother you. For those who love music this
is very frustrating…
Intense burning sensation in the ears, face,
head and neck:
These are symptoms
that brought me to tears of despair.... I swear if I had a firearm, I would
have wanted to end my life after visiting the doctor who condemned me to this
hell!
Insomnia:
I loved to sleep and
slept very well before. Today I sleep 1 to 2 hours per night. I sleep a little
better when the weather is cold. I am constantly forced to get up to drink
because the thirst is so strong that it wakes me up, and the excess water makes
me want to urinate, causing me to constantly go to the bathroom.
As a result, I am
constantly exhausted and forced to take naps during the day.
Sleep apnea:
Even though the
nostrils are wide open, you do not feel that the air is going down into the
lungs, it feels as if you are suffocating. The brain in turn triggers a warning
that wakes you up: it perceives that you are not breathing.
Concentration difficulties:
The constant pressure
in your head reduces your ability to reason and concentrate significantly.
"It's like your head is going to explode!".
Irritation and chronic low mood:
It is natural for a
patient with Empty Nose Syndrome to become irritated and lose patience when
they constantly experience such suffering.
Depression and anxiety:
It is impossible not to be extremely sad when the
simplest things become incredibly complicated: reading, writing, living,
walking, exercising, sleeping, relaxing, listening to music, talking, studying,
working...
In conclusion, life becomes a burden and
you wonder if it is logical to continue like this day after day... Under these
conditions, it is completely understandable to consider ending one's life.
After listening to
the doctors who operated on me, and hearing them say that the "tension and
allergy" were the cause of my problems, while denying that this medical
condition exists. This despite the fact that the symptoms of this surgery of
the turbinates are described online, In this way they "insult my
intelligence!" (These ENT doctors feel connected to this nasal turbinate
surgery).
At the time, I couldn't
find anything on this topic in Portuguese, so I looked in American literature.
When I discovered the meaning of Empty Nose Syndrome and its symptoms, caused
exclusively by this nasal concha surgery, I was very scared. (Unfortunately,
this is a pathology rarely diagnosed outside the US and Germany).
There are websites,
forums frequented by medical experts and ENS patients ( http://emptynosesyndrome.org/index.php ), books
written by sufferers, and advice on how to alleviate certain symptoms.
There is not much that can be done, no cure at
this time. There are implants and other costly treatments that produce little
or no results, and suicide rates are high among ENS victims.
Many do not know they
have Empty Nose Syndrome because they trust their doctors, who are interested
in the profit from this radical nasal amputation.
By making excuses to avoid guilt, the ENS
patient is doomed to live in hell . Just like in the police, doctors are protected by their corps. (We know
it's hard to convict a doctor and take away their medical license).
In addition to these
cases of negligence associated with Empty Nose Syndrome and by the lack of treatment, there is also fraud that goes
beyond the medical sphere and becomes a crime.
This type of surgery
is performed all over the world and has become a way for some doctors to make
money from the suffering of patients. When a doctor removes the turbinates,
they often leave the patient in a state where they can no longer live a normal
life.
For an ENS patient, every day becomes a
struggle. The constant pain, anxiety and hopelessness can lead to serious
mental health problems, including suicidal thoughts. It is vital to raise awareness of the dangers of
conchotomy and fight to ensure that others do not suffer the same fate.
To improve the
situation of those affected, more research is needed, better diagnostic methods
and, above all, a system where doctors are held accountable for the
irreversible damage they cause. The loneliness and distrust that ENS patients
often feel must be acknowledged, and care must work to alleviate their
suffering rather than deny it.
Conclusion
Conchotomy (reducing the turbinates) may seem
like a simple solution to nasal problems, but for many patients it has been the
beginning of lifelong suffering. By spreading knowledge about the risks and working to protect patients,
we can prevent more people from falling victim to this "nasal crime."
It is important that any individual considering this surgery is fully informed
of the potential consequences, and that society as a whole supports those who
have already been affected.
__________________________________________________________
Testimony
of Benoît August 24, 2016
I am telling my story or rather my nightmare.
Almost 7 years ago, due to a breathing problem, I trusted a surgeon or rather
"a butcher" who strongly recommended that I undergo a total
conchotomy of the lower turbinates to fix my breathing problem because I had a
stuffy nose.
Since I am not a
surgeon and had not consulted anyone else, I trusted this ENT specialist
completely. A few days later I was in surgery and ready to remove the
tampons to finally feel the effects of the procedure…
At first, the post-operative course was:
tampons removed, nose still blocked due to blood clots and scabs... But with
the daily rinses, the blood clots disappeared and my nose began to open!
But unfortunately I understood very
quickly and above all I felt that something was wrong! The following symptoms
appeared: breathing with excessive air flow, shortness of breath,
hyperventilation, cold, dry and painful air gushing into the nose: "It was
like I was breathing in broken glass with air conditioning!"
Worried, I nevertheless tried to calm myself
with the thought that in time I would not feel all this anymore... But
unfortunately, the more days passed, the more my extreme fatigue, my pains, my
anxiety and my feeling of powerlessness against what i went through...
Every morning I felt an inexplicable fatigue
due to hyperventilation (too much air inhaled at once!) , pains and of course this anxiety and
powerlessness! I realized that I would no longer live my days without suffering
through them 24 hours a day!
I then went to
another ENT specialist and tried to explain the agony I was going through: he
as well as "my whole family" heard but remained confused and could not
understand what I was experiencing! He still explained that because I had a
deviated septum, the inhaled air "struck" my mucous membranes and
that was why my pain was so intense. Thinking that maybe that was the solution,
I trusted him and underwent another operation.
I then had surgery,
after removing the tampons, at my first inhalation, I no longer had that
feeling of the air "hitting" against the walls... But, when
everything had healed: I still felt this extreme fatigue (+++) , this dry and
cold air that resembled "broken glass with air conditioning" and this
heightened feeling of having an "EMPTY NOSE" that only those who have
undergone conchotomy understand... Again, I thought that with time the symptoms
would go away!
I tried to return to a normal life by trying to
stop thinking about all this but when you have to put up with this extreme
fatigue, these unbearable pains and the daily anxiety, the psyche really takes
a beating! And there, ONE
FALLS INTO HELL... Exhausted, I tried to get doctors and family to understand
me . This changed nothing! Obliterated and alone in the world in the face
of what I lived through and endured with every breath.
Results: Suicide attempt, psychiatry,
antidepressants, anti-anxiety: I was destroyed physically, mentally and
socially . Fortunately, I was lucky enough to meet a person and
his mother who tried to understand me, listen to me and find a solution... For
the pain, a doctor recommended a morphine derivative: I had less pain but still
the same previously described symptoms...
By researching
online, I finally saw a glimmer of hope that made me hold on to life a little
longer: the "Acrylic Rods" (nasal implants) that could relieve my
symptoms. and then the Association https://www.syndromedunezvide.com/ .
Frankringe's
Association for Empty Nose Syndrome. I thought "I'M NOT CRAZY!!!" I'm
not alone in living this hell! Immediately I contacted and discussed with the
president of the association (her husband had also undergone this devastating
operation..). I was finally able to explain what I was feeling both physically
and mentally while being understood!!! An inexplicable relief...
This person told me,
"Yes, there is a way, not a complete cure, because the turbinates cannot
be transplanted or replaced. However, you can 'correct' and alleviate all of
this". The solution: "A conche transplant" (a transpalntation of
cartilage behind the ears to give volume to the few conchas I had left so that
the air would warm up a bit and restore some pressure when breathing (in my
case 70% of the conchas had been removed ).A reason to keep living!
I met a great
professor in Nice who understood my distress and decided to operate on me. I
had a first conche transplant that was insufficient (too much air volume when
inhaling), and then a second transplant, which this time greatly improved my
quality of life!
Afterwards, I
contacted a mobile pain relief team where the senior physician had already seen
similar cases after conchotomy of the inferior turbinates.
He prescribed high
dose Lamaline and Lyrica.
And then, little by
little, day by day, I begin to regain the joy of life, I rebuild myself
physically and mentally. I thank from the bottom of my heart this professor, Mr
LC...... (ear nose throat specialist, face and neck surgery in NICE) and the
mobile pain management team.
6 years of extreme
suffering, but today I can finally return to a tolerable life although it is
still a struggle every day…
If I can help anyone,
give advice, do not hesitate to contact me.
___________________________________________________________
In memory of Mélisa Champion, deceased from Empty Nose Syndrome. August 19, 2016, Written by SNV
Testimony from Marcelle and Jean-Yves Champion, Mélisa's parents.
In memory of Mélisa, our daughter, who died on May 23, 2015 at the age of 33. Mélisa was a very social and friendly person. She had studied tourism to become a flight attendant. She loved to travel and discover other cultures. While traveling, she complained of ear pain, which led her to consult her family doctor and then an otolaryngologist in Québec who suggested a septoplasty because her nasal septum was deviated. This specialist had never mentioned to Mélisa that she would undergo an operation on her turbinates. He had only said that he wanted to make room in his nose so that the air could enter more easily. If Mélisa had been informed of this, she would have categorically refused to undergo such an injury. When our daughter received her surgery report, it said "complete septorhinoplasty and reduction of the inferior turbinates, bilateral" (surgery performed in 2007).
A few months after this operation, she did not feel well and developed several symptoms, the first of which was nasal dryness. To remove secretions, she constantly did treatments that became increasingly longer and more painful, leading to exhaustion and extreme fatigue.
Allergies and asthma attacks followed. Without the lower nostrils, the airflow was too fast, the air was no longer filtered, heated or humidified. She also had facial pain, pain in her eyes, ears, throat and recurring headaches.
She had pain in her lungs and felt them as "frozen" . Mélisa drank warm water with breadcrumbs to ease her lung pain and had no sodium in her blood. From 2008 she received vaccines for her allergies to desensitize her.
As expected, the result was: loss of work, worsening quality of life and return to our home. Over time, her condition and living conditions had deteriorated so much that she visited her ear-nose-throat specialist again in September 2013. He noted several of the symptoms she had developed. In October 2013, Mélisa was on sick leave for Empty Nose Syndrome and was urgently hospitalized in May 2014 for anaphylaxis (severe allergic reaction that can be fatal).
In May 2015, our daughter saw another ENT specialist and his diagnosis was unrelenting, stating that Mélisa had developed "a total paralysis of sinus function, that the tissues and sinuses were dead and there was nothing more to do" . He advised her not to undergo further operations as her mucosa was severely atrophied. She preferred to know the truth rather than be left with false hopes. She found this specialist to be human and responsive: he had taken the time to explain things to her.
Her
nose was so dehydrated that it could no longer perform a normal breathing
function, so she had to live with an AIRVO (an integrated flow humidifier she
received in 2014) . Without
this machine, our daughter would automatically suffocate because too much air
was coming in and it was too cold, causing her lungs and bronchi to become
inflamed and triggering an asthma attack that could last for hours. She
could not do without this machine; otherwise the lung pain was unbearable as if
her lungs were in an "ice pack", horrible…!
She had also been re-diagnosed with Empty Nose Syndrome by this specialist.
Her friend Carole, who suffered from atrophic rhinitis after a turbinectomy and bilateral cauterization of the inferior turbinates, and who communicated with and supported her, asked Mélisa what she loved most in life? Here is what Mélisa responded in writing:
"Let's say that since I became disabled and confined at home, attached to a machine, I try to appreciate the little happy moments with my loved ones and I try to find inner peace to be able to pass away peacefully in the near future... I have no quality of life anymore, so I don't know what I love anymore because I can't do anything! The disease has weakened me to an extreme level! I try to keep myself busy by reading, listening to music, reading newspapers and taking moments of relaxation without thinking about anything. It feels good."
Shortly before her death, Mélisa wrote: "I made a prayer. I asked the Lord to give me a place with him. I know that you are waiting for me and that my place is already ready in your kingdom. To live in peace and without suffering with you, Lord. I leave my soul to dance to a new life in love forever because health is the greatest wealth in the world. Amen."
We hope that this disease, Empty Nose Syndrome, is recognized by the medical world because we cannot understand that such an operation can cause so much suffering and lead to the irreversible loss of our child.
We also want to emphasize that our daughter passed away as a result of a prolonged illness on May 23, 2015 at our home and was in no way a suicide like other victims of Empty Nose Syndrome
Her parents who will forever carry Mélisa in their hearts, Marcelle and Jean-Yves Champion, Canada.
_____________________________________________________________
Harold
B testimonial August 14, 2016, written by SNV
1993 : This story began stealthily when I was cutting metal with a high
pressure oxygen gas torch. A drop of molten metal bounced off the cement floor
and went straight into my left nostril. I thought "it's a trifle, it will
heal."
2000 : Sneezing, mucus like a prolonged cold until I discovered cortisone for
the nose which stopped the symptoms, but the problem continued to develop. ( Sleep
disorders, a single sleeping position... )
2015 : In May I consult an ear-nose-throat (ear-nose-throat) specialist who
decides to operate on me. I trusted him and thought he knew what he was doing. He
straightened my nose, partially removed the turbinates, and I therefore
underwent a septoplasty with partial turbinectomy / conchotomy . In
September, one day, when I'm shaving, it suddenly causes a tear in my nose
(septal perforation). Immediately afterwards I have "a whistling sound in
my nose."
2016: I can't sleep: I'm suffocating because of
the dry heat and the operation, "this feeling of suffocation, of not
getting air (worse than asthma) is really terrible!" I see my ENT
specialist again, who doesn't care. He does a scan that shows a problem. (I'm
sure this is the problem causing my sleep problems.) I suspect there has been neglect. Removing the
nostrils was just routine for him? I would like to consult another ENT
specialist, just to at least have my septal perforation repaired and to plug
the hole in my nasal septum, but the trust is not there. (I fear further
neglect may cause an even bigger problem.)
I am under the impression that I will have to become an ENT specialist myself to explain to these practitioners the risks, implications and procedures of these endonasal procedures. When I read the testimonials of my friends who also have Empty Nose Syndrome, I am no longer impressed by the medical degrees that I see on the walls of these specialist offices. Harold B
___________________________________________________________
Story
from Sandrine J. (France) August
8, 2016
Empty Nose Syndrome is an iatrogenic, unknown,
insidious and disabling disease caused by inappropriate, and in my case
unnecessary, endonasal surgery, which has led to several devastating symptoms.
The removal of all my lower turbinates and part
of my middle turbinates, organs that are necessary for proper breathing and
have a moisturizing and protective role against pollution, dust, microbes and
other viruses, have undoubtedly caused me irreversible damage. The
unexpected consequences have destroyed my health, crushed my promising
professional career and reduced my quality of life .
I want to emphasize
that these surgical interventions, called turbinotomy or conchotomy, were
unfounded in my case.
In November 1991 I
was treated with antibiotics for strep throat, and a week later, without
improvement, with a stronger antibiotic. When even this proved ineffective, an
X-ray of the lungs revealed pneumonia. I received a sick leave certificate and
a much heavier treatment. Still, a cough persisted for months.
In November 1992, at
the request of my general practitioner, I saw an ear-nose-throat specialist who
suggested a surgical procedure on my nose to stop the coughing. I stayed five
days at the clinic. Tampons, which I kept for about two weeks, were inserted
into each nostril. After the tampons were removed, blood clots started running
down my throat for months. I couldn't cheat. I was breathing very badly and had
frontal and facial pain. The healing process did not progress.
In November 1993, a
year later, the ear, nose and throat specialist performed a second surgical
procedure which he said would stop the constant bleeding. When I woke up after
the anesthesia, I had tampons in my nostrils again. A few weeks later, under
local anaesthetic, I underwent cauterization in my right nostril.
No operation report was given to me after these
three operations. That's when my long medical journey began. After burns to my
nose, mouth, esophagus and stomach, I underwent a first gastroscopy which
showed no abnormalities.
In January 1994, after losing my job due to
repeated absences, I moved back to my home region. A GP ordered a CT scan to
find out the cause of my severe headaches and facial pain radiating to my gums
and jaws. The result showed that everything in my nose was destroyed. Worried about taking care of my young children and
finding a new job, I didn't ask any questions, which was a mistake.
I didn't give up and
didn't talk to anyone about what happened to me. Time passed and my pains
worsened. I couldn't breathe normally and didn't have the ability to clean
myself up. I had recurring purulent sinus infections (I didn't know what a
sinus infection was before I had surgery).
My sleep became shallow, the headaches and
facial pains gave me hardly any rest. I kept swallowing bloody scabs and thick,
sticky mucus that I couldn't expectorate. When I tried to get them out by
coughing, stomach acids came up. I was constantly tired, had a hard time
enduring car journeys, lifts and closed rooms. I searched for oxygen.
A strong anxiety arose and disturbed me for a
long time. My blood pressure was constantly dropping, reaching dangerously low
levels of 8 . Aerosols, inhalations,
nasal rinses, as well as all kinds of nasal gels and drops were ineffective. I
took a variety of medications, including antibiotics, pain relievers, and
antacids with noticeable side effects.
I visited many
specialists (ear-nose-throat specialist, allergist, stomatologist,
cardiologist, neurologist, gastroenterologist, radiologist, homeopath). I
underwent numerous blood tests and samples from the nose, mouth and throat. No
diagnosis could be made for all my pains. Years passed and I continued to desperately
search for the cause of the sharp deterioration in my health. I went every week
to my city library where I reviewed many medical documents.
In 2013, 20 years
later, I discovered an article that caught my attention. It was about nose
operations called conchotomy / turbinectomy (a word I had never heard before).
I was stunned. That same year, I consulted a new ENT specialist who
confirmed that my symptoms, particularly secondary atrophic rhinitis ,
stemmed from my operations on the turbinates.
In 2015, I saw yet another ENT specialist who
explained that I suffered from a phenomenon called paradoxical nasal congestion
(too much air passing through my nose), which leads to a feeling of an empty nose and, after
examining my CT scan from 2012, remarked that he "would have removed fewer
turbinates".
Now my health continues to deteriorate. My
breathing remains labored. My facial pain and discomfort affects me daily. What is also very troublesome for me is not the
looks of others, that I give shit, but that they think that anorexia is the
cause of my very great thinness.
Just talking makes me breathless and requires a
lot of effort to regain my breath. I feel pressured and tired . The constant, throbbing pain that starts in my
forehead and spreads all over the right side of my nose forces me to wear
sunglasses, because my eyes can no longer tolerate the light.
I now rarely do my favorite pastime, reading,
due to lack of concentration. I have never been able to accept that I had to
give up my profession in 2003. I no longer drive . I have developed a phobia of microbes and viruses.
I maintain strict hygiene measures.
However, I go for
walks and swim at a moderate pace. I often remember my former time, when I was
so dynamic, sporty, joyful, willing and unique, a time when I worked a lot.
I do not forget that,
as far as I am concerned, it is a catastrophic medical error. I realized,
far too late, that it was a pulmonologist, the only competent one, that I
should have consulted after my illness in 1991 and not an ENT specialist.
In light of my irreparable injuries, I am
helpless and dejected. I regret that I was let down by the doctor who changed
my life. A new ENT specialist I recently consulted clarified to me that I
suffer from what is defined as Empty Nose Syndrome.
My testimony is only intended to warn the public and urge them to think carefully before accepting such a surgical procedure. Sandrine J.
___________________________________________________________
Story
by Priscilla Robert, who died on August 6, 2015 as a result of Empty Nose
Syndrome .
Published August
3, 2016, written by SNV
It all started in
2009. I had sinus infections that whole year. I was on sick leave and my doctor
referred me to several specialists, including an allergist and an
ophthalmologist, because I also had eye pain. It was discovered that I had
asthma. Finally, my GP sent me to an ear, nose and throat specialist who
determined that my turbinates were swollen. At first he said he would
treat me with laser. In March, I consented to an operation where the turbinates
were burned away.
Before I left the operating room the surgeon
said I should be able to breathe better, but unfortunately that was not the
case. Four weeks later, I again made an appointment with the ear-nose-throat
specialist because, according to him, the situation was still not satisfactory.
He then suggested that I undergo a removal of
the lower turbinates as well as a septoplasty to straighten the nasal septum.
The operation was carried out in April and tampons were inserted. The day after the procedure, the tampons were
removed and I had a small bleed in my left nostril. This time it was the nurse
who said I should be able to breathe through my nose, but I still experienced a
blockage. The pain in the nose was very intense and the headache was getting
worse. I started having anxiety attacks, was very pale and was told to sit
down. I had difficulty getting up, it felt like it was being pulled up over the
top of my jaw , and I was really in a lot of pain. I was taken to the ER, but
the ENT specialist who was called refused to see me.
For him, my condition had no connection to the
operation carried out. When I left the hospital I could barely stand up. I ended up consulting another ENT specialist who
refused to "move" after a colleague. I decided to go to Paris to get
a third opinion.
I also underwent a sleep study which showed
poor sleep, snoring and atrophic rhinitis. I was referred to a pain center, but
I couldn't get there because I could no longer stand up, overwhelmed by
fatigue.
Since 2011 I live a hell; I almost don't eat
anymore and above all I don't sleep. I have no sense of smell, my nose is even
more "clogged" than before the procedure, I can no longer exert
myself. I am in constant hyperventilation and my nose is very dry.
I can't stand the cold anymore, it burns. It is
very difficult to talk, I feel constant pressure from the nose to the forehead,
as if someone is pressing down on my head. Lying down is a pain because I
suffocate. I'm completely exhausted and depressed and I'm not seeing anyone
anymore. It's not a life
at my age, it's just not a life .
Since my surgery, my condition has deteriorated
significantly. If I had been warned about the risks, I would never have
accepted to have the operation. I
have sought help from an association that gives me emotional support. I feel a
little less alone and understood. This syndrome is a real disability, but it is
not recognized... Why? I hope my testimony will prevent others from
experiencing what I am going through now. The laser and concotomy of the
turbinates have ruined my life . I was an active person, now I am stuck,
half-sitting, condemned to suffer. A single ear-nose-throat specialist had
the courage to say that the turbinates never grow back…
Priscilla Robert, passed away on August 6, 2015,
as a result of Empty Nose Syndrome. Watch
Priscilla's memorial video by following this link.
_____________________________________________________________
Story by
Françoise L. August 3, 2016,
written by SNV
I am the president of the
association SMNI (Stop aux mutilations nasales iatrogènes) and I suffer from
Empty Nose Syndrome. Before I start my story, I want to make it clear that due
to the consequences of endonasal surgery, I can no longer work. An ENT expert
examination done in 2015 determined that I have a permanent disability of 50%,
and the Maison Départementale Des Handicapés has assessed this disability as
between 50 and 79%. I am an early retiree.
For seven years I have lived a veritable hell
after endonasal surgery which has destroyed my nasal function and reduced me to
a disabling condition, with no prospect of improvement or recovery.
I have had six
operations which now cause severe, irreversible damage and I suffer from loss
of the nasal cycle and paradoxical nasal obstruction (Empty Nose
Syndrome), cicatricial fibrosis of the frontal sinuses and frontal
recess, and my nasal valves no longer function. I have also been diagnosed with
left nasal valve syndrome .
All this leads to constant
fatigue , difficulty concentrating and remembering , sinus pain ,
facial pain and sensory disturbances , as well as extreme dryness of
the nasal mucosa .
My nights have become problematic,
non-restorative, with shallow sleep and constant awakenings due to pain. The nights are worse than the days with this
unbearable feeling of asphyxia (lack of oxygen) feeling of nasal congestion, of
not getting enough air and lack of oxygen. I'm on pain meds and have to take
anti-anxiety meds and sleeping pills when I haven't slept or barely slept in
three days.
My nose no longer works, I can't sneeze and
it's impossible to get rid of the sticky, thick mucus that collects in the
sinuses, causing inflammation and chronic sinusitis . My last analyzes showed a moderate lymphopenia,
iron deficiency, and my doctor wrote on 21/08/2019 on the medical certificate
MDA: "an asthenia and a worsening of my health outlook." My whole
body is struggling, I am completely exhausted both physically and mentally.
2010: I complain of nasal congestion and facial
pain on the left side, I have surgery for a meatotomy to remove an
inflammatory polyp. I thought everything would get better after the surgery,
but the pains got worse...
2011: New x-ray shows that more space is needed in the
nose to reduce nasal congestion and pain: I undergo a bilateral
ethmoidectomy with sphenoidotomy , and the surgeon performs a radical
turbinectomy on my medial turbinates without first informing me or
mentioning it in the operative report...
The results of the surgery are disastrous
(unbearable headaches, I can barely bend my head and can't stand upright). I return to the surgeon who, despite my condition
and x-rays confirming a blocked right frontal sinusitis, assures me that
everything is normal and that it is post-op effects that are causing it. He
writes to his neurologist colleague and claims that everything is normal and
that my problems are not ENT related, and abandons me. (Deficits in emergency
aid!!!)
A week later I have a
seizure: fever, vomiting, my head feels like it's going to explode, my partner
calls SOS doctor in a panic, my family doctor notes an extremely low blood
pressure and orders a blood test that shows a CRP of 210 and urgently calls an
ENT -colleague who notes that the naso-frontal canal is no longer permeable,
that the frontal sinuses are infected and blocked, and the x-ray shows an
infected frontal sinusitis.
I have surgery again
four months later for restoration of ethmoidectomy, sphenoidotomy, septoplasty,
Lemoyne nail and Balloon Sinusoplasty. The operative report notes synechiae,
copious pus in the frontal sinus which is sent for bacteriological analysis.
The infection is gone but the pain remains.
After all, I am trying to return to my professional life, but the fatigue,
the facial pain, the sinus pain, the chronic insomnia are exhausting me. My
nose is very dry, blocked, I don't get enough air and I notice that I am
sensitive to temperature variations and weather changes. I can no longer
sneeze, and excessive secretions block my nose.
I get irritated, depressed, anxious and withdrawn, it becomes unbearable.
I visit all kinds of specialist doctors. I who was naturally jovial, dynamic,
no longer recognize myself and separate from my partner. I am on sick leave and
cannot resume my work, I start with a spa bath, without results. The pains are
getting worse.
February 2013:
New x-ray, new surgery: Draf II to restore permeability of the naso-frontal
canal** to open the blocked frontal sinus. After an improvement of two weeks,
the pain returns.
July 2013:
The verdict is in, the ENT specialist announces that there was a diagnostic
misjudgment, that my problem was not related to the sinuses but to the
architecture, that the frontal sinuses are fibrotic, the right frontal sinus is
completely blocked and that there is also a collapse of left internal valve.
Concerned about cranial complications, he sends me to two distinguished
professors who specialize in neurosurgery and complex ENT pathology.
I see Professor X.
After examination, x-ray and a complete rhinomanometry, he confirms the
diagnosis and adds that there is also a frontal septum luxation and a lower
left deviation, so he suggests a fifth operation: the Lobtrop technique (ie
removal of the right frontal sinus through a bicoronal access, filled with bone
powder, and in addition a reparative surgery of the left nose).
I am canceling the
planned surgery due to fear of the consequences. Professor X cannot
guarantee success and admits that I will never regain normal nasal function and
that all my symptoms will not disappear.. .
February 2014:
Unable
to resume work, I am dismissed "for physical incapacity". The
occupational physician admits a serious disability related to the consequences
of endonasal surgery. Six months later, the Maison Départementale des
Handicapés assigns me the status of disabled worker, and I undergo an ENT
expert examination, which then assesses my permanent disability as between 25
and 30%.
The ENT report notes:
"The presence of a fibrotic blockage closing the right naso-frontal canal,
a polyp blocking the anterior cells on the left and closing the left
naso-frontal canal, one can imagine an Empty Nose Syndrome although the
inferior turbinates are normal."
X-ray shows:
"traces (ie sequelae) of meatotomy, turbinectomy and bilateral
ethmoidectomy and a filling of the frontal sinuses."
July 2015:
Thanks to my status as a disabled worker, I am trying to return to a
part-time job of 20 hours, but the pain prevents me from continuing. My boss
writes that "my health" was not compatible with the requested
schedule: 20 hours per week
__________________________________________________________
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