Victims' Voices on Empty Nose Syndrome after Rhinoplasty, Septoplasty and Turbinectomy

These posts illustrate the extent of suffering experienced by ENS victims. Most of these posts are copied from the Facebook patient group "Empty Nose Syndrome Awareness." If you want to verify the authenticity of these posts, you can follow the link to the group and become a member yourself.

 Most people in these groups have undergone septoplasty, turbinate reduction, nasal valve surgery, or sinus surgery and developed various issues afterward. Below, you can see for yourself the actual suffering these procedures cause among many patients. Names have been removed for privacy reasons.

 

Person 1

I don't know who to believe anymore. One of the doctors I went to a year after my last visit said that my mucosa looked much better than the last time, the second doctor, more experienced in ENS, said that the condition of the mucosa had deteriorated dramatically. The pain has been with me constantly for 2 years. No painkillers work for me. I am currently taking pregabalin, previously I was taking Amitriptyline and Amizepin. I had a pterygopalatine ganglion block, but that didn't help either. I don't know how to help myself. I'm at the end of my rope. I use oils and ointments, but to no avail. The doctor told me that plasma was useless in this case because the mucous membrane was as thin as tissue paper. I've already had platelet-rich plasma therapy, but it didn't help. I wonder if stem cells could help me. As for implants, the doctor said it didn't make sense in my case. I don't know where to look for help anymore. I also have problems with my eustachian tube, but no one can cure it. I am afraid for my future because I am currently an invalid who lives in great pain. I don't know any other person with ENS who would experience such pain.

 

Person 2

It took me quite a while to figure out how I'm so sick because so much medical damage has been done to me - there are so many things going on here.  I am severely sick from this surgery - this surgical mess has caused severe chronic pain & chronic illness -cpap is needed for severe apnea but making this so much worse - so much complex medical troubleshooting these past couple years -all of this is a medical nightmare - I need reconstructive sinus surgery - I can't do this much longer

 

Person 3

Hello has anyone been able to get any sort of test or investigation into precisely why ENS is causing extremely sore dry eyes? I want to find out if it's only the dry non humidified air affecting oil/mucus/tear production, or actual damage to the tear ducts or something during surgery due to the nose being damaged in multiple ways. No idea where to start....I assume if I speak to an eye specialist they will not answer nose questions and vice versa.... Are any sort of scans useful here?  Experiences please? Thank you

 

Person 4

Dear members, I am new in this group. I had nose surgery 3 years ago. The doctor removed both turbinates. After that surgery I am really struggling. I am severely reacting to chemical smell , fogs and cooking smell. Cooking smell gives me a burning nose and throat irritation. I also have red itchy eyes as well after that surgery. Any suggestions or treatment. Another side affects I developed is environmental allergies after that surgery and my acid reflux gone worse. That was 3rd nose surgery, 1st surgery at the age of 4 due to an accident, 2nd surgery 6 years ago (not successful), 3rd surgery 3 years ago. I noticed my sleep apnea and breathing improved but having above side effects

 

Person 5

Hi! I'm new to this group. I recently joined because I had 2 sinus surgeries that changed my life for the worst. In 2017 I had a deviated septum fixed and turbinates reduced. In 2018 a doctor removed the bones leading to my maxillary sinus cavities to remove a large cyst. Since then I’ve had chronic dry nose, chronic inflammation, head pressure, daily migraines, my trigeminal nerve has gone crazy, and my occipital nerve too. I have constant pain in my temple, jaw, my eyes, the back of my head, neck, and the burning goes into my sinuses. It’s a nightmare! My nose constantly feels stuffy and like I can’t breathe very well, but they tell me it’s wide open. I have to use saline rinse and nose oil daily/nightly to try to stop the burning and add moisture. It’s causing my mental health to decline and I’m at a loss how to help myself. This has exhausted me. Any advice would be greatly appreciated. Thank you for accepting me into the group and I’m sorry for everyone suffering too.

 

Person 6

Hello new to the group. I’m glad I found this group as most of you are aware of, ENS is something we have to deal with daily that has really impacted everyday life. I had Turbinate reduction surgery a few years ago then Vivaer to fix the valves which did nothing, then reconstructive surgery, recently turbinate resection / stenosis repair/ and repair of a hole put into my left nasal cavity from first surgery etc. that was not supposed to be there- nothing has worked. 

Is there anything that you have found that helps moisturize the nose, besides saline, etc. also sticking my face over my humidifier. I have tried nasal gel, but I swear that clogs my ears even more so than they’re already clogged. I am thankful to find this group to know that I’m not alone. I feel like this has robbed me of my quality of life. I wish I could go back and make a different decision but can’t turn back time.  My ENT at the time made it sound so simple that this turbinate reduction would fix my nasal congestion permanently. What a joke as it is led to so many daily issues I didn’t have before surgery I can’t even describe to folks 😢

Person 7

Anybody that has admitted themselves into a mental/psychiatric hospital purely so you can be monitored so that you don’t self harm? Do they let you stay in bed most of the day to rest?

 

Person 8

I’m sorry for the desperate post but I really can’t take this anymore. Like many others I’m sure, I have severe suffocation, no sense of airflow, hyperventilation, constant headaches, i’ve had a severe sore throat every day for 2 months (from the dry cold air hitting the nasopharynx), ear pain and pressure, really sore dry eyes, pain in my nose, chest pains and can’t take a full inhale or exhale, dryness, i can’t sleep without medication, i can’t come out of fight or flight mode. Even with cotton in my nose it doesn’t allow a slow or long breath. In the past few days I have been experiencing tinnitus which is absolutely horrible. All of these symptoms are there 24/7 they don’t come and go. I’m really unwell and can’t go out or work. I’m not supposed to take sleeping tablets every night but without them I can’t fall asleep at all. 

I’ve tried everything on these forums, literally everything I can find (aside from surgical measures) and I can’t get any relief. I’ve lived with debilitating pain and illness for half of my life and have battled with health problems a lot over the years but this is a whole different ballgame. I feel like someone’s trying to kill me from inside and I'm just stuck in the moment before death, existing but not living. 

I have absolutely no idea how to live like this. Not even sure what I'm posting for really, just desperate for any advice? Or any different tips to the usual on dealing with any of those symptoms listed above? I’ve never suffered with tinnitus before like this and it’s driving me insane on top of everything else.

Also, I’m obviously new to ENS so I assume many of you will have already seen this, sorry for any repetition for those who have suffered a long time, but please could everyone sign and comment on this petition and ask others to sign (obviously not set up by me as it’s been going on for years). I’m trying to get as many signatures as possible to get it moving quicker. Comments would be good to show it’s still very much active and how many people out there are dealing with this - it helps push people to sign it properly and check their email after.

Person 9

Hi. I am getting worse and worse... my nose is completely dead, so are my sinuses and everything above my upper lip, including palate. I am so weak. Cannot walk anymore.  I have an empty head. I am wondering if I can die for example of heart attack because of that? Or other things. Because I literally feel like I am not breathing. Breathing with mouth does not do the trick either... I have never felt worse in my life and hospitals do not understand... sent me to a psychiatrist, of course I take these meds but they do not help. Along with losing my sense in my nose I lost sense of smell and taste so it means that it is just dead inside...the red area (image removed) means where I feel literally nothing inside. And The first part of my body that feels the air is the throat. But I feel like throwing up. It is not from stress. I am too weak to be stressed and I think I will die soon, because my heart will stop working or so... is this possible? I also lost hope for healing...when I cry I don't feel anything in my nose as well.  Any wetness, any fullness, any pressure. Just emptiness... I don't know what to do... I messaged many doctors but they haven't replied yet... But I doubt someone can do anything

Person 10

Hello. I wish everyone health and improvement. I made a really foolish mistake. I chose the wrong doctor, even though I had previously seen a good one who said I didn't need any surgery. She said, "You have acid reflux, so we'll treat everything together." The only issue was swollen lower turbinates, making it hard for me to breathe normally. After treating my stomach and nose, everything got better. I was sleeping well and breathing okay. But on my last visit to the doctor, he suggested surgery. I didn't want it because I was already feeling better. The day before the surgery, when I tried to cancel, he almost insisted that nothing else would help. I trusted him and asked countless times if there could be any problems afterward, but he assured me it was a simple surgery he did every day. My mother disagreed, but I didn't listen. Now, three weeks after the surgery, (I've had coblation turbinate reduction) He said he didn't touch the bones, only the mucosa, but he removed too much. And worst of all, for no good reason. I went back to the first good doctor, and she said I didn't need any surgery, and now I'm at risk of (ENS) Empty Nose Syndrome because he removed too much mucosa. I've already read a lot about ENS and what mucosa and nerves are for. I'm panicking, experiencing burps and heartburn again. This doctor was just after money; he didn't care about me. When I told him I had all the symptoms of ENS, he dismissed it, saying he'd never had a patient with it. So how is it possible?

What I'm experiencing: I feel like I can't breathe normally, suffocating, only taking short breaths and needing a lot of effort, my heart beats fast, my nose is very dry, and I have dyspnea. I can't take a full, normal breath, but my nose is open, as if my brain no longer signals that I'm breathing. And there's noise. And nobody takes me seriously. I'm extremely scared. I've been taking antidepressants for a year and can't sleep without pills, and I'm sure I can't survive this syndrome. I can't stop regretting and can only think about how I fled from the hospital. And I didn't even have a real problem. Everywhere it says surgery is the last resort! And I was already fine and getting better. Can someone please help me? Do I definitely have ENS? Because I have all the symptoms, or could it be something else? Or could I still recover three weeks after surgery? Is there a chance I'll be okay? Even though I've read that this syndrome can appear months or years later. It's driving me crazy and making me so upset. Did he damage my nerves, neurons, or aerodynamics? Or is there a chance they'll recover? I have a baby! I don't want a miserable life. Can people with ENS still live happily and make their children happy? I suffered for a year (and already had many suicidal thoughts) and last time everything was going well. And I did this. I'm devastated. Please, can someone help me? 

Person 11

I recently underwent septoplasty and turbinoplasty. Since then, as soon as I fall asleep, I forget to breathe and then my body jerks me awake. This happens every time I try to sleep. The only way I can sleep is with sleep medication because it's easier to stay asleep after my body jerks with the meds. Is this empty nose syndrome? What can I do to stop this? I'm desperate for help.

Person 12

Sleep seems to be a major issue with us ENS folks so I have to ask? What do you consider a good night's sleep? If you take a sleep aid, what is it and how long do you sleep? I take Valerian Root 500mg and Magnesium 20mg. I get about 5 hrs. But never feel rested!

Person 13

I can’t sleep anymore because of ENS. I'm living in hell. I don't know what to do. This is really ruining my life. Worst mistake of my life

 

Person 14

Anyone with Empty Nose Syndrome actually gets to sleep. Who in here has ENS but never loses sleep. Or does everyone not sleep?

Person 15

I don’t know what to do. Someone has to help me. Please! There has to be something an ENT can do to help this. I have no Turbinates left!!! None! All day long I feel agony. I don’t sleep, only for 1 hour at most. I’m so so dried out it’s excruciating. I can’t think I can barely write this. I'm pacing as I write this. Not exaggerating, I walk all day without sitting down, I have no relief. I’m going to go crazy from exhaustion and how awful this feels!!! Please can someone respond with some help. I have a family and a young son and I’m on another planet because of this. Picture of my nose in comments. Nothing left.

Person 16

I sleep with this (image removed) every night (nasal plug/dilator) because when I lay down my nose collapses even more from the gravity. I have extremely weak hands and feet. I can walk like 500 meters max. I can't feel the air or just a very little bit.

I have extreme allergy

My face is numb

My nose changes everyday with the environments

I can't think

I can't eat anything, everything i eat I react to so my nose gets more dry

My hair is getting dry and is falling out even my beard

My muscles are gone

I can't go anywhere

And i'm alone all day and my family doesn't understand

I have also multiple chemical sensitivity

I react to all smells very hard even hand sanitizers perfume even spices in food hospitals and new buildings......

My face has changed cheeks sunk in

 

Person 17 Help. I now know what someone said when they said they are breathing through a straw. I had the same sensation all night. I can’t go on like this. I have not slept in weeks and I can’t function. I want to take a bottle of pills and hopefully that will end this. I felt like I was being strangled with muscle spasms. My nose feels hollow and I can’t take it.

 

Person 18

I’m so tired. Can’t sleep and everyone thinks this is all In my head. I don’t know what to do but I’m losing it. Body hurts, and my nose isn’t pressurizing the air. Only relief is when I cry and it feels full. Lord I need you

Person 19

I’m so exhausted today from moving. But I can’t sleep. I don’t know how to describe this feeling when my body needs rest but I can’t sleep because of my breath.It feels like air is not being exhaled properly or say there’s not enough pressure in the lungs? Nose is plugged but not completely. Can Anyone tell me how to feel better?

Person 20

Having a real hard time envisioning a future with this disease. The constant discomfort is too much to bear and I can't find a way to consistently alleviate it. If I had more energy I could deal, but I'm so exhausted. I can't do simple tasks. I can barely keep my job, let alone relax or have any fun. I can pretend occasionally, but that takes effort, and then I'm exhausted again.

How on earth do you survive like this for years? I feel as if I am the walking dead. I envy people who get in car accidents and recover from their symptoms. I wish my body had a chance of recovering. It just can't, because I'm maimed for life.

Worst part is I just wanted to sleep more restfully. Never had chronic rhinosinusitis as it says in my report. Never had trouble breathing during the daytime. NO indication for FESS or turbinates reduction but they did it anyway. I just had a deviated septum and that was ALL I asked for to be corrected

I'm in such massive despair. And there is no one I can go to for help. I've been considering going to the ER at this point but for what? They cannot give me back my nose. I'm out of sick time because my job is new and I've used more than I have already. I'm so sick of being sick. So, so, so, so, so, so, so sick of it. I just need some kind of hope but my body won't even give me a glimpse of normalcy. Just always either suffocating or feeling like too much air. What a joke.

Person 21

Does anyone else experience their symptoms much worse at night when they try to sleep? Dry nose and throat despite moisturizing with nasal spray and nasogel? Feeling suffocated and unable to sleep, unable to relax, feeling like the airways are closing off. Once I finally fall asleep, I wake up panicked after 30 minutes. Any recommendations are appreciated.

Person 22

The unbearable pain is back! I’ve had ENS for many years now and my main problem have mostly been the pain and dryness in my nose. Mainly my right nostril. I had turbinate reduction 10 years ago with the method cauterization. So I still have my turbinates left but heavily reduced. I had a treatment for this 2 years ago in Germany. It was a PRP injection with Acell and I think it worked for a couple of months but the unbearable pain is back just like before and it’s driving me crazy! I can’t sleep, think clearly or do anything. I almost can’t even speak. I have some lotion to make it a bit easier but it barely helps. I talked to the clinic in Germany and they suggest I come back for a second treatment because they say it usually takes two treatments for effect but I’m sceptical! 

Should I go back or do you guys think there are better treatments for me? 

Like I said before the problem is dryness and pain in my nose (I assume from nerve damage) due to turbinate reduction. I want a permanent solution if that even exists.

 

Person 23

Can anyone explain to me what it is with ENS that causes the inability to fall asleep and the constant sleep disturbances?  My sleep is really bad. Although I’m on sleeping pills, I still can’t fall asleep.  If I do sleep, it’s constantly disrupted every hour or so.  I don’t understand why the sleeping pills can’t override the inability to fall asleep.

 

Person 24

Any tips for a better sleep . It's been so bad the last 3 days . Like I could pull a 3-4 hour before but the last 3 days not sure what’s going on I can’t sleep . I am on an anti-inflammatory diet , magnesium , vitamin d , melatonin and Lions mane as of a week ago . Also been using a cpap Machine for almost a year now ,but I still don’t get more than 2-4 hours .I feel like I’m about to lose it , taking any tips. I have seen tips about Bipap machines and oxygen machines as well ?

 

Person 25

I am 6 months post septoplasty and sinus surgery where I had submucous resection of inferior turbinates.  I am in full panic mode as I have recently started feeling so dry, unbearably dry from my nose to the back of my throat that I can’t sleep, have to have the humidifier, and am researching nasal sprays like crazy.  I can still smell, and I don’t feel the cold air like some but I do feel like I have too much air and a constant pressure on my nose. I am praying that I am still healing and I am hanging on to the thought that it can take a whole year to heal from surgery but I also know that at 6 months and feeling worse, this is not a good sign. When does a person start feeling symptoms of ens? How do you know for sure? I am now having panic attacks which I’ve never had before, I can’t eat, or sleep, I’m so scared.

Person 26

Why do we get so dizzy and lightheaded ? So hard to be like this , I was so healthy 

 

Person 27

I have so much pressure in my head and dizziness. Plus I can't take a deep breath of fresh air. It gets me so exhausted to the point that anxiety doesn't even affect me. I feel like I'm patiently waiting for my death. It's been 12 months of this and every bad episode just gets worse, I have no clue how my body doesn't just give up. 

 

Person 28

I was hesitating a lot before writing this, but I feel I need to get it off my chest.

It's two years of ENS for me - my worst symptom is aware, labored breathing. Also switching nose/mouth. Feeling of empty nose, dryness, sometimes pain, constant headaches. Not being able to concentrate, brain fog. Feeling air on my throat, but not in my nose. My voice changed because of ENS. It's difficult to speak. Of course insomnia. I need pills to get some sleep (about 5h). Although I still keep my job and hobbies, I am physically and mentally exhausted. I just wait to take the sleeping pill and survive till the end of the day. Got to a point that I'm weighing if it's worth it to keep on struggling and I'm losing that battle slowly but constantly. It just seems (and probably is) endless. How do you cope for years? Are you a living zombie like me?

 

Person 29

My condition has taken a severe turn for the worse in the last month. Constantly feeling sick with a sore throat, pain in my sinuses, incredibly dry yet congested and constant feelings of suffocation. I struggle to sleep without benzodiazepines and cbd. But more than anything I just feel exhausted all day. I used to work out regularly and now just making dinner feels like a daunting task. 

What has helped some of you with extreme fatigue? Caffeine just dries me out more.I was recently prescribed Topamax for mood regulation and migraines. It’s supposed to help with energy as weight loss as well. That nearly killed me. No joke, it dried me out so severely I was hospital bound. I ended up with a severe sinus infection and unbearable pain for a week. They tested me for Covid twice because of the fever it caused. (Both were negative). This all just feels like an endless uphill battle.

 

Person 29 second post 

I’m devastated. I don’t know what to do anymore. I found out today, my surgeon lied about how much tissue he resected. The ENT who looked in my nose today said he can see straight back my nose to my middle turbinates. His exact words “your nose is completely open”. He said he cannot see any inferior turbinates left, only stubs of where they used to be. He’s going to order a CT, but I am not hopeful. 

 

I have been suffering for months but thought I had 40% left. So I thought there was hope of regeneration with stem cells or injections. I have felt like I’ve had a sinus infection for a month. I’ve been on two antibiotics and I’m still in pain. This ENT says it’s probably not an infection, just severe dryness and nerve pain. He actually diagnosed me with empty nose syndrome on paper - which was shocking. But he said there’s very little anyone can do. Well...duh. That I already knew!!

 

I had really hoped my face/sinus pain was an infection, but apparently it’s just ENS. Which means it’s getting worse. I can’t live like this. Chronic pain in addition to suffocation is too much.

 

Person 30

Hello everyone! Giving you an update on my son Chris Supalla  who got severe ENS symptoms  of suffocation and couldn’t sleep or eat or even breathe!! From nasal surgery;  microablation and turbinectomy 3 months after surgery. 

 

The complications were so catastrophic he took his life! I have sent a letter to the Oregon medical board Detailing his symptoms, onset and devastating decision to end his struggles. Beginning with the ENT doctor telling him that he hadn’t seen ENS when Chris asked him about it , Failing to take an accurate medical history Chris had  TMJ neuralgia , occipital neuralgia, Burning mouth syndrome, And severe  tinnitus!!) 

When he called for an appointment it was several days before they could get him in And he just gave up! My main purpose of the letter is to shed light on the real complications of ENS from nasal surgery and the role of the ENT advising patients that YES it can happen. So that the patients can make an informed decision with accurate information. I’m respectfully asking if any of you want to share your story of ENS with the Oregon medical board. It would be very helpful to show that it is a real complication!! The address is: Oregon Medical  Board.  1500 sw 1st Ave. suite 620.  Portland, OR 97201. I greatly appreciate all of you on this group for sharing your experience and even though I don’t have ENS I’m living with it everyday since my son has been gone. Thank you so much.

 

Person 31

Guys, the news about Marcio Goulart is not good!   His cousin informed me now that he is brain death. The family is destroyed and Marcio's mother is unable to return from Canada to Brazil. So far she doesn't know 100% of what happened, the family asks for discretion on Marcio's facebook, because they fear how she can react because they haven't told her it was suicide. He also asks to thank all of Marcio's friends, for the affection, support and attention to him. Thank you very much to each of you / Marcios cousin. Goodbye dear friend!

 

Person 32

"I can't breath" I finally saw the video of George Floyd  

We should not fear police or doctors. 

I can't breathe, I can't breathe.. I said repeatedly to the E.R. doctor  weeks after my surgery, his response? "You need to smoke a joint and relax" followed by a loud laugh. We are not taken seriously. 

Today is one of those really bad days when I'm suffocating, can't stop crying, my heart rate is 95 and I don't understand what I did to deserve this. My sin was to trust a doctor. 

This might get me kick out of this group but I think we deserve an official statement from Usiascr Usiascr Steven Houser  Jayakar Nayak

This can't continue to happen. As much as I need to find some kind of treatment, implants or injections. I will not financially support any more experimental treatments until I see some serious actions taken.

Person 33

My heart breaks for us all that have to suffer from this condition that was put upon us. I am very lucky to only have ENS in one nostril, for those of you that have both I really feel for you. I have been suffering for 6 years with this condition, with Doctors not believing in me, Doctors thinking I was crazy, robbing my children of me being the most active mom I used to be. I am 1/2 of who I was, I suffer in silence everyday. Why is it so hard for these doctors to listen to us, admit this is a problem and we don't need antidepressants! what we need is to be heard, understood and shown some damn compassion.

 

Person 34

Please help me, I need sleep. When I try to sleep, I wake up several times. It makes me feel worse. Nobody understands my situation. I went to my ENT yesterday. He cannot do anything to help me. He just keeps saying to do saline rinses. What should I do? I take clobazam to sleep, but it makes me feel worse 🥹

 

Person 35

Tisoy Briones Our friend passed away, another victim of nose surgery ( ENS). Let's pray for his soul.  That he should find peace in the kingdom of heaven with God.  My sincere condolences to his family, especially his wife and sister.

 

Person 36

I lost my sense of smell from ENS about 20 years ago when my turbinates were unnecessarily removed. Has anyone found any techniques/ treatments that they have done that have helped to recover their sense of smell?

 

Person 37

Hello! I am new to this forum, thanks for the membership. I come from Denmark and I am in a lot of pain constantly, so sorry if my spelling sucks sometimes. Just want to ask some questions, tell some of my story and symptoms to hear if any of you have similar experiences, or any advice for my situations. I hope it's okay and not too long of a roman I am writing. January last year, my life changed completely. I was booked in for a septoplasty because I had hit my face and nose really hard into a glassdoor in 2014. I had no pain the two following years, just couldn't breathe out of the left nostril. 

In 2016 I began to feel some pressure over my left eye. I went to an ent doctor for the first time, and was told that I had a completely deviated septum to the left and it was probably making the pressure. He said it was a very small operation to get it fixed and referred me to the public ent hospital. Because there was a long waiting time, I could choose to get it fixed at a private hospital, still the State paying. The worst choice I've made in my life!!! At the private hospital she looked at my CT-scan and told me that I also needed a fess-operation (Endoscopic Sinus Surgery), because my sinus passages were too small, and an inferior turbinate operation. She said it was no big deal. I didn't know what a turbinate was, neither googled it or googled the surgeon on trustpilot, I wish I had!! I ended up with three big operations, she ended up earning much more money. And she did not just reduce the inferior turbinate as we agreed, but all of them!!!

Before the operation I was studying French at the University, very active and social, a beautiful healthy looking young woman, Living with the greatest love of my life for six years, planning to have kids soon. A month after the operation everything was a mess, I had not been getting any sleep and had extreme left sided facial pain and problems with vision on my left eye. I went to the ENT hospital emergency department, where they thought I had a severe infection and used all kinds of instruments in my nose and sinuses which just made it so much worse. Their conclusion was I've gotten nerve damage from the operation and they looked at my ct scan from before the operation and couldn't understand why she had made a fess and turbinate-reduction when it looked all fine before. I cried and cried, had my first suicide-thought in life, with my boyfriend sitting next to me, saying everything is going to be fine. But I could already feel the damage that was made to my nose and face and that my life would never be the same. They send me home with antiseizure meds and morphine, sleeping pills etc. But nothing could take the edge of the sharp knife stabbing feeling going through the left side of my nose and eye. 

In the following months I developed extreme dryness in the nose and a suffocation feeling beside the nerve pain. I would lay at night screaming to my boyfriend "I can't breathe, I can't breathe", calling 911 almost every night and day. And they just said: there is nothing we can do for you, you have nerve damage, just calm down. But I could not calm down. 

In the next months I visited every ent-doc, was put on a lot of antibiotics, then afterwards a lot of antifungal oral meds. Because I always had these white scabs at the septum and thick white dry mucus. But nothing changed for the better with their treatments. And I began to swell a lot in the face, especially the left side and got this weird rash all over my face, so no one would recognize me on the street. I was forced to quit my french-studies, because of the pain and no sleep. My boyfriend began to sleep on the couch every night because most nights I was screaming in pain. 

6 months after the operation, everything was fucked. My boyfriend was not supportive anymore,  he could not understand how I could still be in pain, the same with my family and friends. They began thinking that it may all be psychological and I just felt so misunderstood and alone. 

Then one day in July I couldn't take it anymore. I had not slept for three days and I just wanted some peace. I took 250 pills of tylonol (panodil), I thought I would die. Instead I had 24 hours drinking coal and vomiting (also through my nose, the most painful place) and I survived. The day after I thought there was a meaning of surviving and I decided I now wanted to fight. And thought that the medical system would take me seriously now and try to fix the damage to the nerves of my face and nose and my breathing. And that my boyfriend and family would understand, that it was no joke, this was a real physical pain that needed to be taken seriously and that I would need all of their understanding and support. Instead the opposite happened. The love of my life broke of with me the day after my suicide attempt, saying he could never have children with a person who would try to commit suicide because of pain, and my family went on a holiday trip without me two day after. I had lost all hope again. 

And a week later I jumped from 60 meters, from a church tower, but fell down on a roof just below. And some firemen saved me and said to me that now there would be people helping me with my facial pain and nose problems. Instead I ended up in the closed department for mental illnesses. They forced antipsychotic meds in me, 6 men holding me down. For every time I tried to explain the empty nose feeling, the burning pain, the dryness, the knife-stabbing feeling in my eye, nose and cheek, they forced more antipsychotic and benzos in me. I was locked in for two months, the warmest summer, with no open windows, fresh air or sunlight. And my nose became drier and drier and my face more swollen. Then one day there came a doctor from the pain-clinic at the hospital to see me. And he could see how badly swollen I was, that I was having nerve edema, and severe trigeminal pain. He convinced the staff at the mental illness department that there was no psychosis and they were treating me like an animal. Suddenly after 3 months they stopped the meds, said I was free to go, that I had no mental illness, that it was all physical ( thanks for three months in hell). 

I went to an eye specialist and was told I had only 5 % vision on my left eye, because the nerve was pushed. Then to a neurologist who gave me the diagnosis post traumatic trigeminal neuropathy, the most painful condition he said with no real treatment options. Then to an ENT doctor, who said she had never seen such a bad case before, that my cleaning process was totally ruined with the operation and that I had sores and scabs all over she didn't know how to treat. I have much more white staphylococcus in my nose, than normal noses, and you can't give antibiotics to that. And I can't clean my nose with saline because it's way too hurtful. I was also told that my septum now is situated to the right of the center. So the left side is really open. You can look directly up to my eye, and probably have three fingers inside, there is almost no inferior turbinate left. It is bleeding a lot at the moment because it's so dry.

Every time I breathe it's like inhaling the sharpest knife that goes through my eye and forehead and the whole left side of my face spasms and is so swollen. My nose has also changed significantly after the operation even though it was not a cosmetical operation, but only septoplasty. The surgeon said the look would not change. But it is much more flat and wide, I've lost a bump I was borned which I loved, and the nostrils are very big and turned up compared to before where they were small and turned down. I can't understand how the look can change so much with a septoplasty? 

I tried to live at home in my apartment for a while, but my ex boyfriend had moved half of the stuff and it was too difficult accepting the physical pain in a place where there used to be love, peace, harmony, and so many good memories from my "normal" life before the surgery, that just hurts to think of now. I couldn't clean or make food or take care of myself because of the pain. For the last two months I lived at a place for people in crisis. I don't sleep, can't eat or think because of the pain. The only thing that has helped me was a nerve block (spg) with lidocaine in the nose for a couple of weeks ago, it lasted for three hours. I would like to get more of those, but there is only one neurologist that can make them at the hospital, so there is a lot of waiting time. I've tried all of the anti seizure meds, antidepressants for nerve pain with no effect. I think it is too complex with the breathing, dryness and air hitting all the nerves all the time. I am now on tramadol 200 mg, oxaxepam (benzos) 3 time per day, and 3 imovane sleeping pills for the night. But I have no quality of life. I can't go out because of the cold hitting the nerves, can't focus, can't breathe. Lost my boyfriend, my education, my look, a lot of friends, and developed a bad relationship with my family because of the constant pain affecting my personality, so I mourn a lot. I have an appointment at the aqua clinic at the end of mars. I don't know if my case is too complex, but I have nothing to lose. The Danish pain clinic wants to inoperate a nerve stimulator( a metal plate) at the ganglion of nerves behind my nose and eye, but it sounds so invasive, and I am really afraid. Sorry if I ended up writing a long journal here. Perhaps it's because I feel so alone with this and need to get some out. I understand if many of you stopped reading at some point. But my questions here for you: do you think aqua clinics treatment can help the nerve pain besides the mucosal lining? Do any of you take any pain meds that work? Are you also having extreme nerve pain in the whole side of your face, not just your nose? Do you also have one side that is more wide and open in the nose, like asymmetrical breathing? Has the look of your nose also changed completely after the surgery? Are you totally swollen and puffy in your face? Have any of you lost your vision? Have you lost your partner, friends, education, personality etc. because of Empty nose syndrome? Have the Empty nose syndrome affected your skin, like rash or dryness? Have you experienced nerve blocks that helped? Have you also been misunderstood, like it was a mental illness? Is it impossible for you to rinse the nose because of the pain? You Can just answer some of them if you have the time.

 

Person 38

Help doctors!?I try to sleep but my pain, anxiety, stress, dryness, running nose, no air feeling, depression etc drives me crazy

I'm crying right now after my surgery 3-4 months ago because of this condition. I have always been a happy and outgoing person but now after the surgery. My life have change for the worst I feel real suicidal but I can’t stand this anymore only my family keep me alive but don’t know for how long. God please take me away!

 

Person 39 

Hi all, I am 5 years post-op after having a septoplasty and turbinate reduction by submucosal resection (SMR). I have severe symptoms, mainly suffocation, paradoxical obstruction, fluctuating dryness and nerve/facial pain and tightness. I was wondering if I could please have some opinions on my CT scans as well as an endoscopy that I recorded myself using my own camera. 

 

Person 40

I don’t even know where to start. Please look up my back story here and search my name. Up until a couple of weeks ago, I was going to come on here to tell you the good news that I was doing a lot better. My turbinate reduction was on January 17th, 2023. Unfortunately things have seemed to have fallen apart and I don’t know why. Prior up until a few weeks ago, I was still experiencing the paradoxical obstruction although to a lesser extent, the sensation of stuff constantly stuck in my nose was stable and I hadn’t had any cold/burning sensations in my nose for almost 4 months.  Now I started experiencing the horrible cold/freezing/burning sensations again, just as bad as in the beginning. I live in Wisconsin, USA. I was originally thinking it was the very dry/cold air that has triggered it back off. I had a mild bloody nose. I’ve added so much humidity to the air and really have tried adding more moisture to my nose via Rinopanteina. I look in there and the tissue looks pink and ok now. It only seems to be getting worse though. I can’t stand to breathe because it hurts so much. I’ve tried my nasal filters and mask. Nothing helps. I feel defeated and like the rug has been pulled out from me. At least last year I had hope that maybe I would just heal, because it was so soon after surgery. It’s been a year now and I obviously don’t have the same hope. I don’t know what’s happening or why. I feel helpless. I’m scared. I have other health issues I have to deal with and I don’t know how to go on like this. Has anyone that experienced the cold/burning or has a resolution of this with implants or injections? Thank you.

 

Person 42

Hello all. I had a rhino-septoplasty done 7 weeks ago, where my surgeon cauterized my turbinates to make my nose appear slimmer from the front. Today, I realized that  I wasn’t breathing (or that my brain was not registering that I am breathing). I noticed earlier that I was forgetting to breathe and that it was especially apparent when I was speaking. I am in a constant state of panic and my heart is racing. I am so scared, I am only 22 and feel like my life is over. I just wish I had never gone through with the surgery. I was not able to fall asleep tonight, I used to joke that I could fall asleep anywhere and anytime, but not anymore. I feel like there is no hope.

My surgery in October 2018 resulted in both inferior turbinates 50% resected 

Cut with surgical scissors, and left middle turbinate amputated completely. 

(I had agreed to septoplasty and trimming of scar tissue from a previous surgery.) 

Symptoms: suffocation, insomnia, dryness, inability to warm/filter/moisten the air, chest/lung pain and congestion, discomfort of air constantly hitting the back of the nose and throat causing constant irritation and triggering constant acid reflux, sensation of inhaling unfiltered air, general nerve pain especially down the arms and legs. My symptoms were at their worst in mid-January. On a scale from 1 to 10, they were a 10. I would say I am now about a 6 on a good day and an 8 on a bad day. 

 

Person 43

I am really suffering lately. I have had ENS for over 8 years now.  I am always walking a very fine line between coping and not coping.  For some unknown reason my suffocation has escalated.  As a result I am once again hardly sleeping and my anxiety level is high.  That is the one symptom that really puts me over the edge. I am feeling such despair right now. I see all these healthy people on Facebook enjoying their lives with family and friends and I am sad I am not one of them.  I really have hit a double bottom.   I first hit rock bottom late 2008 and I came back after a few years maybe 35℅ or so and now I am close to where I was when I started. I don't understand why I regressed. You all know me.  I have tried it all. I have never worked so hard in my life at trying to solve this.  Please no suggestions on implants etc.   I am up on everything.  I just feel like venting.

 

Person 44

"Hell on earth, I don't know if I can go through another day. Suffocating. Ahhhh. If anyone can help, I can't deal with this."

 

Person 45

I´m still thinking to suicide... No help, no information here...in Czech Republic

 

Person 46

I swear it feels like I'm dying daily  . More power to the people that have been living in hell for 10 to 20 to 30 years . I definitely think if advance treatment doesn't come around . I won't be here.

 

Person 47

Thank you for accepting me into this group !  About 5-6 years ago I had a deviated septum surgery with turbinates cut and tissue removed. Since then my condition worsened considerably. On top of that I had 2 left nostril blocks where they soak a cotton pad in acid and stick it up your nose. My life is hell on earth for I can’t breath walk stand up, it compromised ears, head, throat esophagus abdomen spinal cord discs, literally I count my days and wake up in the morning mesmerized that I’m still here . Anyone having better ideas on how to make our voices heard before too late ? Thank you !

 

Person 48

I cannot take it anymore, I try to be strong, super strong, but I feel I'm dying.

 

Person 49

Hi everyone, I had 2 turbinates surgeries; laser in May 2017 and radiofrequency in April 2018. Since October, my nose is not blocked anymore. But I have now the sensation of suffocation, too much air, lack of resistance and lack of airflow sensation as if it was numb. (I don’t have dryness.) I sleep with a sleeping pill and xanax but I can’t stay like that and don’t know what to do. 

 

Person 50

I just want my life back.  I don't think I can handle ENS much longer, stem cell options need to be present NOW.  Where to go, how to raise the money?

 

Person 51

I've been staying up for 24 hours straight for weeks at this point. I've only slept maybe 2 or 3 hours ;( Woke up because I stopped breathing. My mouth is all dry... and I have a show. And I just want to sleep peacefully like I used to. It's been like this for a while, progressively getting worse. 

 

Person 52

For those of you that have suffocation and severe numbness due to severe damage in one nostril, what do you do about it? I have no feeling in my right nostril and the nerves are destroyed. Scar tissue formed over all the nerves and it causes me severe anxiety and suffocation feelings 24/7. Putting cotton inside my nostril does not help at all. Humidifiers do nothing. Humidity does nothing. Inhaling steam does nothing. When I pour ponaris oil in my nose it helps 15-20% but it only lasts 2 hours or so. I hate that there is no help for this stupid condition. And I lost my job too because of it. I can’t stand this world.

 

Person 53 Tisoy Briones (Deceased: Suicide due to ENS)

Please help me. I want to go back to my country. I work here in Saudi Arabia working as a salesman. My company does not understand my situation, I explain about ENS disease but no one understands me. I had cauterisation of inferior turbinate and submucous resection. I feel bad 24/7, no sleep, feeling no oxygen in my lungs. I try suicide everyday. My company won't pay me my contract for $3500 to send me back to my country .I'm still here in my village and not going to work because my body is always weak. Anyone who gives me a donation is a big help for me. My daughter and my wife are waiting for me. Please may the Lord touch your heart to help. Thank You all and godbless

 

Person 54

A few months after the surgery, I had the first panic attack of my life during a yoga retreat. And then another one in a sauna. Nothing helped me relax anymore that had helped me during all the past years. My body was different and I couldn't tell what had changed. I was wearing a Garmin Vivosmart 4 band which measures 24h stress (HRV heart rate variability) and it showed me that something had changed in my body: my heart was not able to relax anymore. It was so bad that I was not able to work anymore, I was always tense, irritable, or exhausted. Every day I had so much tension in my body that for at least an hour I had to shake my body and scream into a pillow - just to get rid of the worst tension. Nothing helped. No matter what I would do. I went to so many psychotherapists - regular ones and also trauma therapists and "voodoo healers", nothing helped. I tried everything from beta blockers to antidepressants, nothing really helped me. 

 

Person 55

Slowly but surely losing my grips here. I don’t feel like I have much time left. The resistance in the nose isn’t the reason for suffocation. Even with resistance like a tissue I still don’t feel the air refresh. I feel like the last bit of nerves I had that let me feel the air I breathe are gone. That’s the only thing that kept me going. Back then, Every now and then I would breathe and I’d feel a little satisfied if I’m lucky. Now it’s all gone. I’m constantly trying to catch my breath and my chest is starting to hurt.

I feel like I’m in a constant flight or fight mode. 

 

I was pacing back and forth all night trying to catch my breath yesterday. I had a phone on my hand just Incase I had to call the Emergency care. My parents told me they’d get mad if I did so I didn’t. 

Person 56

Three years ago I wrote that my nose is dry, now my nose is very very dry from deep inside… the skin of the nose and the septum is thinner,  mucosa is dry. I have shallow breathing, and now this week is so hot, I wake up with panic and high heartbeat (90-108). These high heartbeats are so frightening! It's all day now. Do you also suffer from high heartbeats? Are there doctors in this group to ask? Thank you.

 

Person 57

Hi guys, or girls maybe also. Does anyone have difficulty now with sex/libido with ENS? I mean, it looks like I cannot have a good sexual desire for girls like before, and even less erection than before. To me, maybe it could be linked to shallow breathing by nose, but I cannot be sure. Sorry for the rude post, but I just wanted your feedback! Cheers.

Person 58

Does anyone wake up in the middle of the night or in the morning with a headache that feels like your brain is lacking oxygen from shallow breathing? I normally wear an insert to block one nostril but I’ve noticed on nights where it falls off or I don’t wear it I’ll wake up this way, disoriented, extremely foggy, and with this hypoxic like headache.

 

Person 59

Hi I’ve not posted for awhile, I started with empty nose syndrome 1 month after rhinoplasty. I had my turbinates reduced with Radio frequency 😞 6 month after surgery I hit Rock bottom. My symptoms were, TMJ, neck pain, dizziness, fatigue, heart pupations, can’t feel air going in and out of my nose, anxiety, depression. 

 

Person 60

Life with ENS: Symptoms

 

Physical symptoms

* Nose feels too empty/hollow/absent.

* Diminished nasal airflow sensation feedback ('paradoxical obstruction')

* Extreme sensation of dryness of the nasal cavities, with or without crusting.

* Not enough moisture/mucus production.

* Dryness of pharynx, soft palate and back of the tongue (dry pharyngitis / laryngitis)

* Feeling of needing more nasal resistance (or nasal membrane responsiveness) 

* Increased pulmonary sensitivity to air-borne irritants, strong scents and cold air. Causes much uneasiness in breathing and sometimes even long-periods (can last hours) of severe shortness of breath, depending on the degree of exposure.

* Diminished sense of smell and/or taste. Can be confusing - because although there is a diminished sense of smell there is also hyper-responsiveness to light and volatile airborne chemicals, fumes and irritants.

* Difficulty projecting or resonating speech. The voice seems weak and requires some straining to sound loud and articulate well, which causes uneasiness in speech.

* Feeling weak and depleted of energy.

* Very poor quality of sleep. Not necessarily full sleep apnea, but shallow and dry breathing, which often switches entirely to mouth breathing only, waking up a lot very dry, with headaches, severe dizziness and very little REM sleep.

* Relatively dry skin and eyes.

Cognitive symptoms

* Difficulty concentrating ('aprosexia nasalis').

* Difficulty performing mental tasks.

Emotional symptoms

* Marked reduction in sense of self and very crippled sense of well-being.

* Irritated and/or depressed mood. Often clinical depression.

* Anxiety.

* Avoidance of social interactions.

 

Other characteristic physical symptoms that many ENS patients develop

 

* irritating sensation of thick stagnant mucus stuck at the back of the throat. Because of the dryness of the mucosa the mucus propelled to the throat (on the way to the stomach - the nasal mucociliary clearance that occurs in all humans) simply becomes too dry and sticks to the sides of the throat instead of sliding smoothly unfelt.

 

* Chronic sinusitis.

* Worsening of pre surgical nasal symptoms, such as allergic rhinitis, etc'.

* Epistaxis.

* Hardly any mucus production, or the opposite – episodes of excessive rhinorrhea.

* Foul smell from nasal cavities.

* Gastroesophageal reflux (GERD).

* Elevated levels of blood pressure.

* Hormonal and metabolic imbalances.

* Significant weight gain.

 

Person 61

Yesterday i almost fainted again, I was working, and doing heavy lifting while suddenly I felt light headed. I told my coworker I wasn't feeling well, and I went inside to sit down. My arms and legs started tingling, I started seeing black before my eyes, and my hands started to cramp up. I was also having trouble breathing, and felt like I couldn't get enough air. After like 45 min, I was still light headed, but I could move again and went home.

This isn't the first time something like this happened to me. Last summer I had exactly the same, but then, I completely blacked out.

I went to the doctor after I got back from work, and he said I was probably developing a habit of breathing badly because I can't get enough air through my nose, since it always feels blocked and dry. That I started to hyperventilate. I looked at the symptoms of hyperventilating, and he could be right.

This is the second time this has happened, and both times it happened when I was doing heavy work and it was hot outside. Problem is, I ALWAYS feel kinda light headed, and have the feeling i'm suffocating, cause the air i inhale through my nose doesn't feel right.

The doctor even advised me to get some kind of antidepressants to cope with the feeling of suffocation, but I feel this is only a temporary solution, and I have my doubts it will work, since every inhale I do, reminds me of how bad i can breath.

Has anyone else here developed some kind of breathing problem because of their ENS? The helplessness of not being able to breath in combination with hyperventilating, felt like I was gonna die.

Person 62

I'm on the third night of insomnia because of ENS/sinus infection and I'm becoming more and more depressed. I can't work properly, therefore I'm losing my clients and I am unable to meet any deadlines. I can't see my friends or boyfriend either because I'm constantly suffocating and in pain due to infection. Antibiotics have no effect on me, as I also have a bad MRSA. Not even Bactroban/Mupirocin could cure it. Doctors here feel overwhelmed by my situation. One doctor even recently told me that I could never cure, not only the ENS, but I will have the infection for the rest of my life as well because my nose is unable to defend itself from bacteria. He may be right, but then I am in a huge denial.  

I'm only a few weeks before Aqua but I feel like I'm losing my will to fight. I just want it to end somehow. My art helps a little but I'm starting not to feel any satisfaction while doing it. I just want to lay in bed and do nothing...I'm not sure why I'm writing this here but perhaps I think that you are the most eligible to understand. It's not easy to talk about how bad this is to anyone who can't fully understand how horrible this is. I want to be able to sleep at least! I can take even Valium and not fall asleep, the suffocation is THAT bad.

Person 63

I have a question. What is everyone’s relationship with meditation and deep breathing? Ever since I've gotten these Empty Nose syndrome symptoms I feel like I'm not connected to myself spiritually. I don’t feel grounded. I feel like I'm disconnected from the rest of my body. I don’t know if this is just anxiety (derealization) I’m dealing with or because of my nose. I feel like I'm floating through life. When I meditate I actually get terrified now because I'm not feeling anything in my body and in my nose. I used to meditate daily! Meditating is what would relieve my anxiety and daily worries. Anyone else feel like they are in a bubble, isolated, or can’t meditate like before? Thanks🙏🏻 Namaste. Sending healing vibes to everyone!

 

Person 64

Hi guys. After almost 2 years ENS my girlfriend has left me. I still can't work, or enjoy holidays, I'm anxious and depressed. My whole body hurts because of Empty Nose Syndrome and other trauma's. I am really desperate and don't know what to do to feel better. How do you guys cope and stay at relationships?

 

Reply comment 1 to person 64

Fuck man. That really sucks. 🥴 I was left by my girlfriend as well (a while ago). And it is still kind of hard for me. As if this disease wasn't bad enough, being alone is even worse. 🫤

 

Reply comment 2 to person 64

When I learned about my ENS and another condition I had, I reached out to 2 past girlfriends I loved very much, like the kind I would be there for if they were sick. One of them snubbed me and the other was there for a while and eventually quit when things got worse. It's a big disappointment for sure.

 

Reply comment 3 to person 64

Better to know now than later.  My first wife of 7 years asked for a divorce 3 weeks into my diagnosis.  My recommendation is to get a dog.  They can help tremendously

Person 65

Hello everyone, it's been a while, but I wanted to show you a list and see if any of you have had the same problem. Feel free to comment or you can just list the numbers separated by commas in the comments if you've experienced any of them. 

1. Running out of breath when talking (occasionally)

2. Feeling as if you cannot fully exhale

3. Stomach bloating 

4. Chest pain

5. Chest infections/ wheezing at times

6. Severe anxiety/ panic attacks

7. Rapid breathing/ hyperventilation

Please add more to the list as this is my life at the moment and although we are all different it will help us with anxiety if we know it is our ENS that is contributing to our problems. Thanks all and take care!

Dear group, Recently I had a final hearing in the disciplinary lawsuit (in appeal) in the Netherlands against my surgeon. I lost on all accounts, further proving these surgeons are virtually legally untouchable for their mistakes and misbehavior. It was somewhat cathartic however to write and speak out my entire plea of what had happened to me before, during and since this surgery almost 4 years ago that impacted my life so severely in front of multiple judges and ENT surgeons including my surgeon.

Story : I woke up in the operating room with a bright red arm. The operation was just over. I was able to go home after a short stay in the recovery room. I felt bad and was in pain. The first night I couldn't fall asleep. Every time I dozed off, I woke up gasping for breath, a feeling of dread. I didn't sleep the next night, and neither the night after. Every time I breathed through my nose I got the sensation that I wasn't breathing at all. This feeling, together with constant pain, dryness, daily bloody scabs I still have after three years. I can only fall asleep, 'get through the panic', with heavy medication.

Very soon after the complaints at home I started looking for what could cause this strange sensation, in combination with a nose operation that had just been performed, and I immediately came across the collection of complaints known since the nineties under the name Empty Nose Syndrome. 

Paradoxically, too large an open space in the nose after surgery means that the receptors in the nose can no longer do their job properly: the airflow is not perceived, moistened or heated enough. The turbinates (conchae) are of crucial importance here. 

After the defendant returned from vacation, I immediately raised this with him, and the defendant immediately took to the defense: that I should not look up such scary things, that nothing was wrong and that everything looked good. He didn't want to talk about it. Defendant has maintained this attitude for the past few years. But more than that, the defendant has aggravated my trauma and ability to deal with this new reality by denying, not investigating, suggesting a psychological disorder as the cause of my complaints and giving me unconfidence in the entire medical world…..

Person 67

I’m so incredibly sad. It’s been over ten years now since My surgery. I lost my chance at having kids, I’ve lost most of my friends because I know they don’t want to be around someone that doesn’t feel good. I’m all alone. I don’t have family to comfort me when this gets scary. I want to feel normal. I still can’t find anyone to get my implants out. They show up on an X-ray. I don’t see making it past 40. I'm dying of depression and not breathing. I bet my heart will be the thing to take me out. Broken heart. If I don’t go mad from the mental trauma first.

 

Person 68

My time to vent: 

The more "normal" and healthy people you meet, the more contrast you experience and the more you see HOW dysfunctional is life you live with ENS.

On top of 24/7 physical agony and inability to function, you realize that you have lost everything: all your (top) educations, bright and successful career you worked so HARD for, love, personal life, money, family, friends, social status, lifestyle, future that you looked forward to. 

Basically your life is all about survival, for years, with only occasional/rare moments of happiness. You realize how low you have fallen. And fallen from high altitude making it even more painful. I GRIEVE my past self, I GRIEVE my past life. I am tired of playing the same "survival" cassette every day and night... I hate Empty Nose Syndrome and how it has robbed me of life. I am very sorry we have to go through all this, friends.  Love u all.

Person 69

I am sorry my family. I have failed myself after a sinus surgery that I signed for. Only to be better, not worse. It was only a biopsy I was told. Only a biopsy. When I regained consciousness, the ENT surgeon had already removed my entire left middle turbinate and said he did nothing but a biopsy. 

 

Six months to a year later I learnt what he excised from me. This I learnt from a neurosurgeon and then I stumbled upon this Empty Nose syndrome group. I couldn’t sleep a wink for half of the year 2017. 

 

Today, I have an implant but it doesn’t make me complete. I still have suicidal ideation and my mind is always astray from work and the daily activity that I could do before. Now it is a piece of history and nothing is returning. Neither can I take the law into my own hands to murder the doctor who did me wrong nor can I get a full cure. I will never see heaven again when my world was mine, my family was mine, my job was mine. I have talked to so many Doctors and shared what I feel. Found a handful of doctors who treat but they cannot reverse this syndrome totally. I realize that this world cannot give me the friends and the love I really need anymore due to the depression and setbacks I have after acquiring Empty Nose Syndrome by an ENT Doctor of horror. Many here I know have become the victims of fate after inappropriately conducted surgeries that did not make them better. Some took their own lives and some are still thinking about it. Others are moving on feeling invalid and handicapped hiding behind a smile that isn’t a true smile. We have lost it all. We will have to remain or just perish into nothingness.

 

Person 70

Does anyone know of someone who got cured or was able to live a normal life again? I’ve been dealing with this for a year and I can’t take it anymore. I spent my 21st birthday alone. Not answering any of my friends or family. I hate this.

Person 71

I told my friends and family that I'm sorry but I can't do this anymore and truly knowing some of this is my fault .... I went from just the pain and dryness to now for the past 4 weeks having to constantly feel like I have to catch my breath while breathing through my nose ... If I try to just breathe normal ...my chest gets so heavy like I'm holding my breath but I'm not .... I could have done so much to prevent this ....

 

Person 72

Nobody truly understands unless you suffer yourselves with Empty Nose Syndrome. I try and try to explain it to my family and close friends....but they just truly don’t get it! 

 

For my Mother’s Day gift....I am supposed to fly a few thousand miles to go see my kids and grandkids. Yes...it would be a dream come true. But my ENS is so bad that I don’t even leave my house. How am I going to be in an airport....fly...and spend a month with my kids and grandkids when all I can generally do is have a room to myself to constantly add medicine...get out the dry stuff (if possible)...add more medicine and constantly tug, pull, and push on my nose??? They have made plans for me to go hiking with them, to a petting zoo, a dinosaur exhibit, a wedding, and so many things that I am no longer capable of doing. I do tell them how bad it is, but also try not to make every conversation about how miserable I am. This just breaks my heart! 😢💔 Thanks for listening and understanding.

Person 73

I saw a new ent doctor about my surgery that led to Empty Nose Syndrome symptoms and pain and he told me in his 35 years experience he's never seen a patient with such complications from radiofrequency and he never seen such bad nasal pain. He said minimally invasive surgeries don't cause Ens and facial pain.

 

Then he said maybe the FESS or septoplasty caused my symptoms.

He went on to say things like maybe stress caused it etc and that I don't have ENS when I do. It's so hard to find a doctor who tells you the truth.

 

Person 74

Bodlaj - PRP injections in the nose - as we know a waste of time and money - 6 injections 

2 alloderm - implants. One ruptured straight away. He made me pay for another set of tests which by the way he now stopped ripping people off. I probably spent in the region of 12000 pounds (equal to 14 000 euro) plus with him. 

Donde. Said he helped 158/176 people in 2013. I flew to him and spent 1750 euros on PRP and PRP. It did nothing. He now doesn’t bother to help.

Dr das 2015-2017. For me, the best out there but each one wore off and I spent maybe 15-18k USD with travel. Also lack of follow ups

Aqua 2019-20-19. 3 injections all worn off in 4 months. 

Last year ear cartilages were taken from my own ear as apparently this is the best procedure now after more changes. No change.

So to date. 50 000 pounds plus spent. (Equal to 58 000 euro) 3 implants. 18 injections. I have been to the USA 6 times. Germany 9. Italy 2 times with piazza appointment. It is very very hard now to stay positive and trust people. There are 3000 people here. Think before you spend. 

Person 75 Christian Bruhn

Hey, I suffer only for 4 months of ENS and I can't imagine tolerating this even longer. It feels like slowly dying' and my hope for a cure or even a little better is small. Christian killed himself in 2020 after being butchered by Dr. Seong at GNG Hospital in South Korea.

 

Person 76:

I had a turbinate reduction a year ago. I now suffer from extreme dryness, congestion, nose bleeds, nerve pain on my left side, and am now beginning to experience suffocation and insomnia. I am continuing to look for an ent doctor who will even say ENS out loud. The ent I’ve been seeing for the last 6 months at least tries to treat my symptoms. 

 

Person 77

Hi dears 😢 I feel so bad it's been a long time since I gave my news... I suffer from severe hypoxia, for 6 months I have been in hell I can no longer eat .... please help me how to cure hypoxia?  D lactate is high and hippurate is 0 😢.  Please can you help me?  How to treat hypoxia?  how to cleanse severe acidosis?  I am dying. Can oxygen for the lungs help me?  Please I need your advice I suffer from martyrs please help me 😭

 

Person 78

I'm in so much pain, I'm almost out of my mind, trying not to end it here, trying to stay alive. I have severe apnea and it got worse after this surgery. Air flows into these open, bleeding sinuses all night long, drying them out. From the minute I wake up, I’m in excruciating pain and bleeding. I do not have the money to travel for reconstructive surgery. I'm suffering from other medical injuries that almost killed me and other health issues. 

 

Person 79

Please give me advice, I’m up for going after any kind of treatment, anywhere, that can benefit me anyhow. I’m in Brazil and no doctor can help me here.

I don’t sleep, I suffocate, I’m tired all the time. I have headaches, I feel the air hitting the back of my throat and I gain a crazy amount of weight, it’s hard to exercise. I can’t concentrate on anything; I feel even incapable of researching the syndrome. I underwent what I thought was ‘septoplasty’ in December 2020 to breathe better. (As you can see my septum seems untouched) (image removed) Right after taking the splint my nose started to swell and get red. At some point I had to go to the hospital thinking I had a panic attack because I couldn’t feel the air through my nose. I was constantly advising the doctor and seeding pictures, but he just prescribed antibiotics firstly one and a half month after infection.

After some time, he decided to “reopen” my nose to clean it  since it was constantly red. He would always say it was normal not to breathe normally yet, that if we redid the septum may get better. Obviously it never got better, and he agreed to fix the esthetic part with a plastic surgeon friend of his. It’s aesthetically horrible anyway, I’s always swells unless I take a high dosage of cortisol, then my nose looks decent.

I never managed to get back to work, I used to be a successful professional and now feel like barely surviving. All my energy goes to raising my daughter as a single mom and trying to live a life as close to normal as possible, but it’s sooo far from my normal self. We used to travel, swim, and hike. I'm so limited now.

At the beginning when I was in bed, I would be shaking and feeling like I would faint all the time, I think because of the nervous system. Even going to the supermarket was a thought. But I push, I push, I push, no one around me has any idea of the struggle I do to complete everyday tasks, to carry out some sort of social life. 

My symptoms got 20% better than three years ago. I went to 5 doctors and no one gave me hope, they just say that I have to clean my nose twice per day and moisturize with a pharmaceutical saline solution, which I’m not doing because it gets worse.

"I'm not sleeping, I'm suffocating, I'm tired all the time. I have headaches, I feel discomfort from airflow in the throat, and I'm gaining a crazy amount of weight, it's hard to exercise." I can’t concentrate on anything; I feel even incapable of researching the syndrome. 

Please indicate to me some doctor or treatment anywhere, I can’t go on like this any longer, I’ll go to the EU, US, I don’t care, I NEED to get better because of my child!

Person 80

Hello all group members, I urgently need your help as I am in a dire situation. My nose was severely botched by an unethical surgeon, to the point where it's almost amputated, and I'm enduring a devastating experience. My nasal bones were aggressively removed during the operation, resulting in severe pain ever since.

I've sought advice and help from numerous doctors regarding this excruciating pain. Some suggested it could be due to nerve injury, while others mentioned nerve entrapment. My question is, has anyone else experienced this level of pain, and has it improved with surgery?

I implore everyone not to criticize without truly understanding the immense suffering I'm enduring. If anyone can offer assistance, please don't hesitate to do so, as you may potentially save my life.

Person 81

Hi,I had a septoplasty surgery in Turkey and my turbinates were shrinked with radiofrequency without my consent for 2,5 months ago. I developed Empty Nose Syndrome symptoms shortly after. I have been to several Ent-doctors and all of them are telling me that my symptoms will go away since I still have remaining turbinates. They could see that my turbinates are shrinked but I still have remaining turbinates so my symptoms will get better.

 

Person 82

Ten years later, my life is completely ruined. A career that had just begun was lost, no friends, no social life, stuck in a room, isolated because I can't sleep. I can't get up to go and eat until I've had enough sleep, and my mom has to cook for me. Family and friends don't understand this condition because they see a normal, unscathed face. I've also had to struggle with my mom for years because she doesn't understand what I'm saying.

 

I think and realize that I didn't need septoplasty with SMD from the beginning. After the surgery, I went back to the doctor and said I couldn't breathe, it feels like there's a big hole inside my nose. He then replied by saying he had done an excellent operation and that he had studied in the Netherlands, and I should give him candy for such a good operation.

 

Person 83

Does anybody recover from the suffocation feeling? I think I was healing a bit from three weeks ago, the moment I felt like I could not catch my breath no matter how hard I was trying, which causes me hyperventilation. I have seen a couple of theories relating to this concept, like aerodynamics and nerve damage. I personally think upper front turbinates play a role because every time I feel better while my middle Turbinates are swelling, and my left side is slightly better than the right because the left got removed less, but it might be just a coincidence.

 

Person 84

After how many years did everyone’s symptoms become the worst ? This is my 9th year with this and this past year has been the absolute worst for some reason

 

Reply 1 to person 84

I have been fighting the iatrogenic condition for 2.5 years. Pain prevents me from living, working and thinking. I'm afraid of what will happen next with my life. I can't imagine it could be any worse.

 

Reply 2 to person 84

Going on 33 years, I don't see how I can last much longer. The pain and inflammation is getting horrendous 😭😭😭

 

Reply 3 to person 84

9th year. Septoplasty+SMD completely ruined my life. Can't breathe, can't sleep. The left part of the brain hurts. I can't open my eyes until I get adequate sleep. Taking 3 days to complete 8 hours of sleep. Almost bedridden. Lucky if I get to eat what my mother cooks twice a day, if not it's once a day.  All day, all night in bed, trying to sleep.

 

Reply 4 to person 84

In about the third year, I felt that my nose slowly began to degenerate. Worse to this day.

 

Person 85

Has anyone who’s had implants or stem cells had big improvements with ens-caused eye dryness? Eyes are so sore 24/7. They burn in the sockets. I can't get relief - I tried many drops, gels, heat masks to stimulate glands, distilled water, sprays etc. Even with products my eyes still feel so dry and nothing seems to alleviate. I keep my nose moisturized inside 24/7, always have nostrils covered with tape and/or soaked cotton inside, use a humidifier, nebuliser, steamer etc. just need relief from even one symptom of this vile condition. It's hard enough dealing with the rest. 

(for info i actually had normal, quite watery eyes until this damage was done to my nose, never had anything like this in my life)

Person 86

Hello everyone, I hope you are doing well. I'm a 27-year old musician, who just graduated from Conservatory last year. I underwent a partial Turbinectomy and Septoplasty in July, 2022. I started developing ENS symptoms in October, 2022. Mainly dizziness, fatigue, tiredness, memory loss and cognitive loss, difficulty concentrating, also dryness in the nose, airways and eyes. (I developed dry eye syndrome). 

 

Person 87

Hello! From London, U.K here. Thank you for accepting me into this group. Having a nightmare with my health for decades. I Was told I have hyperventilation and I have all the symptoms of ENS. I had a septoplasty in 1997. I am desperate to be diagnosed but don’t know where to go. I am in London in the U.K. Does anyone know any specialists here? Desperate for a diagnosis. Am so confused if symptoms are definitely this or just coincidence and anxiety - hyperventilation, dry eyes, blocked nose mostly at night, breathing through my mouth, dizziness etc

 

Person 88

I recently had a septoplasty and turbinoplasty. Since then, as soon as I fall asleep, I forget to breathe, and then my body jerks me awake. This happens every time I try to sleep. The only way I can sleep is with sleep medication, as it's easier to stay asleep after my body jerks. Is this empty nose syndrome? What can I do to stop this? I am desperate. Kindly help, please.

Person 89

It's unacceptable that many doctors fail to fully inform patients about all aspects of certain surgeries. Patients often discover complications too late, when they are already suffering. Yes, we are responsible for our own research, but at the same time, there can be misinformation on the internet, and patients should be aware of what they are getting into. I wasn't informed about the true purpose of my turbinates, nor was I told about ENS being a possibility. I was a desperate 19-year-old at the time, seeking relief for my breathing issues. Even earlier this year, I was desperate to find a solution to the blockage I was experiencing. Doctors who withhold information, lie to people, and gaslight them deserve condemnation.   

 

Person 90

Do any of you also have such terrible pain in the sinus area? Additionally, pain in the eyeballs and swelling of the eyelids immediately after waking up. Doctors say I don't have a nasal infection. Trigeminal nerve damage was suspected. I had a pterygopalatine ganglion block, but it's probably even worse after that. I take medications for neuropathic pain, but they don't work. I don't have the strength to fight the pain. This has been going on for two years.

 

Person 91

This is my CT scan yesterday, I’m very upset and I cried when I saw it. The whole inferior turbinate has been removed. I feel a burning sensation (deep in my nose ) with each breath and that's killing me. Will that feeling get better with time?

 

Person 92

Hi. I just wanted to give an update. It is getting worse and worse for me. I have lost everything. My nose is FULLY numb inside and partially outside. Feel like I have no face.  Just a hole instead of my face. Suffocation is so bad. My stomach is all tense because that is how my body compensates the loss of airflow. My upper lip is also insensitive to cold. I also do not feel the entrance of my nose. Literally like not only empty nose, but empty face syndrome. (Significant damage to the trigeminal nerve).

I also cannot taste sweet, salty, ect. The trigeminal tastes. But the worst is the lack of a nose. I don't know what to do... I don't think there is anything that will help me or anything that will improve, as it started many months ago and in the last couple of days proceeded so badly. I don't think I will make it. I don't See any sense anymore. I cannot even walk. Only to the toilet. And back. Can't believe this happened to me.

 

Person 93

Is there anyone who has lost sleep due to this condition who considers this the main problem. I’m scared, because I can’t sleep , ordinary sleep pills help little, and they don’t prescribe strong sleeping pills. I feel very bad, my head and heart hurt. Fatigue and drowsiness during the day. How, in addition to pills, can you try to sleep with ENS?

 

Person 94

I want to know how you guys deal with depression and loneliness. I am very young and I have no friends and obviously since I am depressed all the time, no one likes to talk to me. I am spending most of the time in my room alone. I was a very ambitious student all my life and was very good in studies but I have lost all my focus. I was about to drop out from university last month but since only 1 year is left I am using all the energy left in me to get the degree but I am pretty sure I can not do a job with ENS. I need some suggestions, what should I do with my life ?

 

Person 95

Hello! I’m new here and I would like to know if anyone developed ENS symptoms only a couple of weeks 3-4 weeks after turbinate reduction surgery that got worse and worse? 

 

I was able to breath immediately after surgery and experienced mild-moderate dryness, crusting and discharge but once I cleaned my nose with saline I was able to breath without problems.

 

Around week 3 something happened and I felt more congested (subjectively) despite having less to no discharge upon examination. My doctor said the healing is complete and the surgery is successful, but my breathing became worse and worse.

My sense of smell got worse too, severe dryness and facial pain started, headaches, feeling of nasal obstruction worse than first week post surgery when objectively the nose was very obstructed with blood clots, crusts and discharge.

I’m one month post surgery now and I’m getting worse. I don’t feel the air when I breathe, I constantly gasp for air and I barely sleep 2-3 hours with sleeping pills next to a noisy humidifier.

My breathing is ten times worse than before surgery when my turbinates were enlarged or immediately after the surgery when my nose was objectively obstructed with blood clots and discharge. The feeling of suffocation and not feeling the air is insane. I cannot understand why I am getting worse. If I talk with people who underwent this surgery they never experience nasal obstruction getting worse and worse or suffocation.

I should mention that my turbinates were not removed completely. They were partially reduced with microdebrider, how much I don’t know. My doctor thinks I am crazy because there’s no objective obstruction, therefore I have no post surgery CT scan…

Person 96

Before and after turbinate reduction. Look how much thinner my nose looks

I have extreme nose valve collapse

Dryness

Not feeling the air

Extremely weak hands feet

Extreme sensitive to smells

Constipation

Sinuses pain

Headache

Not feeling real

Food that makes it worse so many foods

Person 97

I want to ask how to deal with outside weather, since my turbinates surgery my mucus gushes backwards clogging my head up,  also getting watery drainage when out although my nose is dry when inside.I had a microdebrider surgery of the inferior Turbinates; they were not cut.  All I wish is that I never had the operation as the surgeon said I wont be worse and I am a thousand times worse now. I Will be grateful if anyone can help and if anyone suffers in the same way.  

 

Person 98

Hello I'm almost 8 months post surgery.My symptoms are dryness,suffocation,manual breathing,anxiety and bad sleep. I want to try hyaluronic acid injections. Is it safe to do it so early? What symptoms did it help you with?

 

Person 99

My nose is not breathing. hypoxia. Day 4 the heart began to suffer. Resting pulse 90-110. During this time, I made 2 cardiograms, and in each situation it is even worse. I knew that cardiologists would not understand that the nose was to blame. I was prescribed pills for tachycardia, to support the heart, sedatives, for pain in the heart. Nothing helps! I have not slept for a long time because of my nose, not at all. I walk with a dry, atrophied, heavy breathing nose, every second I feel a stone on my chest and a feeling of constriction and tingling in my heart. I really think my heart can stop at any second. The nose is not able to replenish the work of the heart, pills do not replace breathing, oxygen. Is it worth going to the hospital ? This is probably the end, if not today, so tomorrow.. I am in danger. I was healthy...Ohh, Jesus

 

Person 100

I'm  4 months after implant surgery - nasal floor and lateral wall collagen  implants. On one hand feels like my nose got narrowed which is good but on the other breathing  is still impaired, suffocation still present  and I have chest and diaphragm pressure / pains. Breathing feels manual. Furthermore, A couple days ago I started to feel air in my throat and it feels like I breathe with my throat instead of my nose. ( cold air goes directly to my throat).  which  I find strange as implants should redirect the air... I guess there is nothing else I could do and I will wait a couple more months if it stays the same I will get them removed.

Person 101

My symptoms originate from V2, a part of the trigeminal nerve: my symptoms: freezing cold, dryness, itchiness, Pain. My symptoms are between 5 (one is minimum) to ten (ten worst) 24/7 non stop, since surgery from 1974. Do not waste your money on dr demitry, esteban, strauss (leipzig, ukraine (stem cell), our issues are related to nerve damages, which non of the drs (either ent or neurologists) know about proper treatment

 

Person 102

People please don’t hesitate to help to overcome that suffocation, I’m dying really  Any tips to help, I can’t read anything  Any tips can help please now

 

Person 103 Post 1

Last night, I ended up at the emergency because I became so weak from sleep deprivation and dehydration. They did a CT scan and put me on two IV drip bags and I managed to sleep a little bit in the ED so they discharged me. Everyone keeps saying generalized anxiety disorder as my diagnosis, but I'm not anxious, only after I understandably haven't been able to sleep. I saw the surgeon yesterday and he told me it is all in my head and that ENS sufferers are mental nutjobs and put it all on me.

I had a CT done at the emergency, but of course, no one knows how to interpret it with regards to ENS. The surgeon looked at it and said I still have my turbinates and that I didn't have ENS. I don't believe him because of how my sleep has been severely impacted since the surgery.Can anyone please advise my next steps... How do I try to obtain a formal diagnosis somehow? Should I share my CT scan to someone here to look at if possible?

 

Person 103 Post 2

Hi guys, on 2 April, I had a septoplasty and submucosal reduction of inferior turbinates by an ENT plastic surgeon. The purpose of the surgery was to improve the appearance of my nose which was botched due to previous plastic surgery but had been functional and I just wanted to make it look more aesthetically pleasing. Since this surgery, I have been in a living hell. I am unable to sleep. My body wants to fall asleep but my body stops me falling asleep and I wake up again. I am scared, I now have anxiety, heart palpitations and shakes as my perfect life has been destroyed. I am desperate, and lonely, and my husband and mum don't believe my suffering. Prior to the surgery, the surgeon told me not to worry about ENS and I stupidly trusted him. I am based in Perth, Australia. I took melatonin last night and it helped me somewhat but I had a very bitsy sleep. Can you please share advice with sleep and any success stories. Do people  recover from this? Is there successful treatment? Any treatment in Australia? Please help xo

 

Person 104

Hello, I'm almost 8 months post surgery. My symptoms are dryness, suffocation, manual breathing, anxiety and bad sleep.

 

Person 105

My teen had turbinate surgery when she was 13.5 years old. After the surgery, she said her breathing hadn’t improved at all - and was even worse. Has bloody scabs in her nose, says she feels like she is only breathing through one nostril, doesn’t get a full breath in, and breathing in cold climates gives her a headache. About a year later, she developed this habit of constantly sniffing. Says she nothing comes out when she blows her nose, but it feels like there’s mucus and she has to sniff. Is this last piece part of ENS? I’ve only recently discovered (from google) that she very likely has it, but I know nothing about it or how to help her. I want to try hyaluronic acid injections. Is it safe to do it so early? What symptoms did it help you with?

 

Person 106

How can I cope with losing my job and not being able to work again? I had to resign from doing something I loved, at a place I believed in, with people I cared about because I felt incapacitated by ENS. Now I'm not sure what I can do going forward, or how to overcome the feelings this has left me with

 

Person 107

I am mom of Armine, my daughter suffers a lot, I suffer with her. I’m very angry with the surgeon who ruined my daughter’s life. And there is no place for her to express her anger and suffering apart from this group.  Guys, I feel very sorry for you and I cry myself seeing all this, I hope there will be a good treatment for all of you. Please support each other. Don't judge each other. Apathy is worse than anger as Mike spoke.

 

Person 108

I’m absolutely hopeless. I need some uplifting words. I am suffocating almost 24 hours of the day at this point. I don’t know what to do. I see Dr. Nayak at Stanford in January but I don’t know how I’m going to wait that long. I’m so miserable

 

Person 119

Hi! I have ENS. Sleep is almost impossible for me. The inability to fall asleep and sleep disruptions are terrible.  Many nights there is no sleep. If I’m lucky enough to sleep I average about three hours.  

I’m new to this group but very glad I found it. I’ve never had sinus issues or infections prior to May of 2022 when I had a terrible smell in my nostril with crusting.  The ent said I had a right sided sinus fungal ball. The ct scan showed a mild deviated septum and the diagnosis was mild sinusitis. The ent said he needed to operate to remove the fungal ball.  He then proceeded to tell me “that I had broken my nose as a child”.  I told him I had not but he said “well you don’t remember”. I told the ent that I wanted nothing done to my nose as I had had no problems with it. And only wanted the fungal ball removed. The fungal ball removal was scheduled for June 2022.  An hour before the removal a nurse approached me and said “oh you are here for nasal reconstruction”? I told her that I wasn’t and told her I was there for fungal ball removal from my right sinus. She showed me a copy of what I had signed in the ENTs office back in may and it said “nasal reconstruction”.  We never received a copy of the form back in may and I didn’t realize what I had signed. .  Anyways my husband immediately called the ENTS office to question it.  My husband was told that this was the way it had to be worded for the fungal ball removal.  This was one hour prior to the operation.  

We trusted the ent and went ahead with the surgery.  I knew something was wrong shortly after.  I had excessive cold air flowing through my nostrils, crusting, burning, severe dryness in nose and throat, reduced sense of taste and smell, headaches, right ear echoing constantly and many more symptoms.  Then the sleep issue began.  It is a nightmare. The inability to fall asleep, disrupted sleep, no sleep you name it.  On a weekly basis it averages out to around three hours a night. I went back to the ent and he admitted that he had done a nasal reconstruction on me. He had never discussed this with me prior to surgery.  It was a few weeks later when we received a copy of his surgery notes that we realized he had also done turbinate surgery  which he had never told us he had done and we never agreed to it. I had no idea at that time what a turbinate was.  I was so upset.  I had never heard of ENS either.  I saw another ENT who said I have ENS.  I’m devastated.  My entire life Has changed.  Functioning with very little sleep is sheer torture not to mention all the other issues.  There have been many days when I’ve asked myself if I really want to be here anymore.  My doctor has put me on heavy sleeping pills and other meds to try to get me to sleep. The pills don’t help much at all.

 

 I’ve read through many of your posts and don’t know how you cope, especially with other symptoms like breathing issues.  It appears that different people get different symptoms.  My life has totally changed. I used to be a happy person. Now all I do is cry, can’t concentrate etc from lack of sleep and many of the other symptoms I now have. Do any of you live In British Columbia?  I will try to follow these postings. I forgot to mention the feeling of fear and pure torture when I can’t sleep which is most nights. What do you do with the excessive cold air flowing through the nose? At times this is unbearable.  I should mention I had a happy busy life before.  This condition has created fear and anxiety and a feeling of hopelessness I have never felt before. My heart goes out to each and every one of you.

 

Person 110

I’m sick of the suffocation. I’m sick of my new life when I was 100% healthy before. My ENT scammed/lied to me and it cost me my life. All for him to make a little bit of money. I worked so hard to end up like this is a big joke.

 

Person 111

I hate to post this here but the love of my life just left me after 8 years. I’m so devastated and would do anything to get better so we could live a normal life together. Empty Nose Syndrome has stolen everything away from me like so many others here. I’m supposed to see Nayak in September just for a consultation but my heart issues and worsening breathing are going to make it very difficult to make it. I’ve been rapidly declining for the past year and am desperate to be better. My heart monitor and test results all came back normal but my heart rate is constantly high, sometimes up to 170s without BP meds. My blood pressure also spikes up to almost 200 without meds . I guess I’m just wondering if anybody lives a normal life, is there a chance of getting better. I’m sorry to post this today of all days but I’m at an all time low. Thank you everyone and bless you on this 4th of July!

 

Person 112

ENS has impacted my life in so many ways already. Had a newborn in April ‘19 and surgery in September ‘19. I have missed out on most of my son’s development from being really sick and anxious and depressed. 

The more I read on here the more I realize my chances of recovery are pretty slim. 

 

What I don’t understand is why we spend so much time arguing with each other rather then getting together and going to the government or something. I know ENS is being covered up but there’s got to be a way we get some sort of victory.

 

Person 113

Has anyone felt like their life is so ruined that you turn to drinking on a daily basis? This started last year for me just to feel numb but it did also help relieve some nerve pain inside my right nose. Combine that with some Amitriptyline meds for nerve pain, it somewhat helped me. That pain is not distinct anymore but I still feel pain & pressure once in a while on the sides of my nose. This is pain I never had before surgery. 

As time went on, I felt way too open in my nose & it felt weird. The resistance is not the same anymore & I can’t get used to it. I keep placing that nose thing I made up my nose & it helps a lot. However, it’s not something I want to wear when I go out. So, I never leave the house. Sometimes, wearing that thing I made and it causes some pain. So, I turn to drink some alcohol to get a little buzz to feel relaxed. I’m not myself! I haven’t been in almost 2 years

I wake up in the morning wondering how this happened? I was normal & now I can’t leave the house because my breathing has been disrupted & it puts me in panic mode. When I get nervous, I have the tendency to dry heave. I know taking the Amitriptyline causes dry mouth & alcohol does too but I do get mucus in my nose. Sometimes, yellow with some post nasal drip. I just wish I didn’t have surgery. I don’t know what else to do with no insurance.

 

Person 114

I had a few good days, then the suffocation returned. I've spent the holiday so exhausted, frustrated, and unhappy. My body physically cannot relax. I'm so, so, so tired of these symptoms and it's only been a bit over 3 months. I don't know how you all do this for years...I commend you. I'm in such despair and feel I will never have my life back. I was so, so healthy before... 😢. That surgeon butchered me and left me as a shell of my former self. Depressed thinking I will only be able to live in the rare fleeting good moments that are so few and far between.

 

Person 115

I miss my old life, where I could do whatever I wanted, not have to constantly worry if I’m going to be able to sleep tonight, and where I could just breathe freely. I would have made it by now if this had never happened.

 

Person 116 post 1

My life is ruined 💔. My condition is getting worse! I don't take pills! only one for the night to at least sleep!  Yes, I no longer have suffocation, maybe because we are in winter!  No anxiety!  But I'm very tired from insomnia, I'm just fading away...Sorry for my sad post. I´m just a human who suffer since this surgery

Person 116 post 2

I destroyed my life trusting the surgeon who always said that everything will be fine. He lied to me, he destroyed my life for 1300 €, my life cost 1300 € ... He never talked about the risk for breathing. Now I do not live anymore, I only survive, it will end badly for him. I will avenge myself because he destroyed my life completely by lying to me that everything will be fine. I regret this surgery so much that I would have preferred to die of a catastrophe than to suffer. I had a lot of plans to start a family. Now I have isolated myself from everyone because I suffer

I know that doctors are not gods, but they must talk about the risks the patient may incur. And do not lie to patients giving false hope and destroy the life of the human being just for money!

 

Person 117

Hi all, I am 5 years post-op after having a septoplasty and turbinate reduction by submucosal resection (SMR). I have severe symptoms, mainly suffocation, paradoxical obstruction, fluctuating dryness and nerve/facial pain and tightness. I was wondering if I could please have some opinions on my CT scans as well as an endoscopy that I recorded myself using my own camera. You can see one CT scan recording is pre-op and one is post-op, for comparison. The endoscope footage was recorded a few months ago, so is approximately 5 years post-op. Thank you all, I really appreciate everyone in this group.

 

Person 118

Today, I was prescribed Zoloft to help cope with my new life after having my turbinates amputated. It's been a year and a half since my surgery, and things are only getting worse, not better. I still can't comprehend how any surgeon could consider this outcome acceptable. If I had known that my quality of life would be so drastically altered, I would never have consented to the surgery that day. I use the word "fatal" because the person I once was feels dead.

I'm not seeking sympathy; I just needed to vent, I suppose. I apologize if I sound defeated, but that's truly how I feel. The doctor ensured that all the necessary precautions were taken, making it appear that the surgery was essential.

I had no sinus issues before the surgery, but now, I suffer more than I could have ever imagined. There's nothing I can do except try to find a way to cope and find joy in anything... anything at all. I'm sorry, everyone.

 

Person 119

New to the group, I got my turbinates reduced in 2012 and nothing has been the same since. I've always known about ENS but have been hesitant to call it that since I don't feel suffocation. I didn't do any research for a few years because I was in denial and convinced I would get better, but I've accepted that this is my life now.

 

My main symptoms are:

 

Breathing cold/dry air

Air hitting the back of my throat, which gives me sore throats sometimes

Nose drips uncontrollably in the winter

Headaches

Trouble sleeping and trouble feeling well rested even after a full night's sleep

Drowning sensation if I sniff too hard

 

And this is after a conservative procedure, I don't have a CT scan or anything but it only feels like they removed slightly too much turbinate if anything. The method used was Radio frequency I think?

 

The pain is really bad sometimes but for the most part I live a pretty normal life, I work full time and am wrapping up my second bachelor's degree this year. But sometimes the pain makes it really hard to focus on work or anything I enjoy doing. If I'm being honest I'd give up all my savings if it meant I could get my turbinates back. I would trade this for cancer if I could, at least you can fight cancer and at least it doesn't make you suffer until something else kills you.

 

Person 120

I haven’t slept throughout the night in over 2 years.  Everyday it is difficult to function without sleeping. Can anyone suggest something that can help me sleep without being addicted?  I am mentally and physically  drained.  My last surgery in May made the situation worse.  When I came home from the surgery I vomited blood all night.  My ENT doctor didn’t seem as if she was knowledgeable about ENS or she didn’t want to admit that my last surgery was a mistake. She said there is nothing else she can do to help me.  In the meanwhile, I am in pain every day and dread going to sleep at night.  Does anyone else experience facial pain,  tingling feelings and throbbing along with all the other symptoms of ENS?  I live in Connecticut.  Does anyone know an ENT that could help me?  Thank you to all of you.

 

Person 121

Just like to report that a dear friend of mine passed away yesterday after suffering from atrophic rhinitis/ENS . He left a letter asking that the ENT community start helping people who suffer and start taking this disease seriously! He was 54 leave a wife and 2 beautiful kids 26 and 24 . He suffered 15 years yet the last 2 years he had unbearable dryness and ENT’s kept telling him he was okay ? Not sure if we have a memorial page or not ? He mentioned that he tried and tried to get help from local ENT’s and travelled  to B.C to see a doctor who trained under Nayak though all he could offer was HA injections, it helped for a bit , unfortunately he didn’t have the money to travel and pay for expensive treatments or surgery. He wanted his wife to have a better life and being only 53 she would find someone . He also mentioned the doctors name who did the surgery which he didn’t approve however you can’t sue in our country or it’s basically impossible. In Canada very few maybe 2 doctors recognize ENS and maybe 1 treats it . I’m very sad he’s gone as we’ve been friends for years and I’ve seen him suffer like me , his dryness drove him to his death ! I just pray that doctors finally listen to him and the rest that suffer!

 

Reply 1: to person 121

yes I hope so , I feel for his wife and kids and am sick that the doctor is not even held accountable or really care ! It’s sad I always thought doctors are there to help however lots only care about money , just sad. My ex doctor messed me up so bad and retired shortly after. People don’t know how awful this condition is unless they have it.

 

Reply 2: to person 121

Thanks Jennifer it’s truly sad , the dryness he couldn’t take anymore however I think it was that ENT doctors lied , didn’t try and help , just said to use sprays and live with it ? Most  doctors said implants don’t work or injections, he even suggested different types of implants or surgery and none would help or even refer him . He lost faith and thought his wife deserved better and felt she could find someone in his letter . He was tired of being a freak , so sad

 

Reply 3: to person 121

Did he take his life? Incredibly sad. So sorry

 

Reply 4: to person 121

Ann Johnston yes he couldn’t deal with the dryness and that ENT doctors here in Canada wouldn’t help or even do anything, some just told him it looked fine and in his head , some said yes a bit dry but not Atrophic or ENS . He felt helpless and was tired of making his family suffer, R.I.P. my friend

 

Reply 5: to person 121

so sorry for the loss of your dear friend. Also for him and his family and friends. 🥰🥰Graeme, I too lost a son of 32 years who took his life from ENS   ! He had severe suffocation and couldn’t feel his own breathing 3 months after nasal surgery! His name is Chris and he died 3 years ago on memorial day weekend. He also wrote a letter that he wished the dr would have told him about the risk of ENS especially since Chris specifically asked him about it before the surgery!! the thing is he went to the top of the top of the doctors at OHSU in Portland and when he asked about ENS the doctor just said  he did  thousands of surgeries and hadn’t seen it! I believe Chris would still be alive if the doctor told him of the risk because he would not have had the surgery! He was on Facebook, empty nose syndrome awareness group and there’s an article written in the New York Post about him and empty nose syndrome   you can just Google his name Chris Supalla and it’ll come up ! if you want to direct message me that would be fine. Again, I am so sorry for your loss. Sending prayers for all of you.

 

Reply 6: to person 121

Mary Supalla My son suffers of sofocation the 24/7. This is the most terrible that could have happened. I don't know when my son will collapse. I am hoping for a solution soon.

 

Person 122 speaks about his deceased brother at his funeral:

Robert Byrnes took his life 2021 due to Empty Nose Syndrome

Suicide due to Empty Nose Syndrome: So I'm going to get a little heavy,  so get your tissue box now if you're the crying type  and save a few for me  because I may need one too.  Rob became very sick in April of 2020.  He went to multiple doctors who struggled to provide answers to medical anomalies which became increasingly worse day by day. 

With no diagnosis coming from the medical community in New York, I researched and advised traveling to the Mayo Clinic in Rochester, Minnesota, so that we had a team of experts whose sole focus was diagnosing medical anomalies like Rob's.  I was confident there was both an answer and a cure.  We left for Rochester, Minnesota on the 26th of October. 

Over the next couple days, there were batteries of blood work, MRIs, CAT scans, and other tests.  On October 28th, we met with an ENT specialist who diagnosed Rob with a condition called Empty Nose Syndrome.  Rob had an operation 24 years earlier when he had breathing problems caused by a deviated septum in his nose. 

The operation was a blessing at the time, as he was struggling to breathe, and this had an immediate and positive impact.  Unfortunately, there can be complications.  24 years after the operation with a pandemic and safety protocols for wearing face masks, Rob's empty nose condition was triggered. 

I had researched this condition and I knew there was no cure.  It may not kill you, but it essentially wiped out any quality of life one could expect to have.  As we walked out of the office, I could not hold back my tears.  While I was grieving for Rob, I simultaneously was in fear for my own life as I had had the same operation and was now at risk. 

In what might have been the worst possible situation for Rob, he put his arms around me and told me not to fear.  I was there to comfort him, yet it was he who was comforting me.  The next words out of his mouth spoke to the essence of my brother. He said, it was better for this to have happened to him, rather than me and my sister Val, as we both have children.

A selfless act, a selfless man that is a hero who walks among us. That is a soldier who jumps on a grenade to save his team. That is a product of St. Paul's. That is a Yonkers police officer. Rob asked me to write this eulogy today.  Because in his heart I believe he knew that I shared his love of family, friends, community, Ireland, and the police department. 

And I believe he knew I would convey his thanks and offer comfort to the community.  He loved you, and he loved life.