Empty nose Syndrome - Bente Van de Veerdonk: A Life Interrupted by Septoplasty and Turbinate reduction

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Empty Nose Syndrome yet a tragic story -Introduction

Bente Van de Veerdonk was a vibrant and determined young woman from Oss, Noord-Brabant, in the Netherlands. Born on December 28, 1997, she had a promising future, skillfully balancing her aspirations in marketing and communication with a career in childcare. Tragically, her life was cut short in November 2024, just 1.5 months shy of her 27th birthday, after a devastating struggle with health issues related to septoplasty and turbinate reduction.

During the septoplasty, Bente's inferior turbinates were reduced using coblation, a method that burns the nasal turbinates. This procedure ultimately led to Empty Nose Syndrome (ENS). Alongside ENS, Bente also battled Crohn's disease and thyroid imbalances, which further compounded her significant health challenges.

A Life of Ambition and Dedication

Bente’s educational journey reflected her passion for learning and personal development. She pursued childcare studies at ROC de Leijgraaf from 2014 to 2017, earning qualifications as a pedagogical employee. Her dedication to children shone through her work at Avem Kinderopvang from July 2019 to November 2021, where she provided care and early childhood education. She later decided to further her education, studying marketing and communications at LOI (Leidse Onderwijsinstellingen) in 2023, aiming to broaden her professional horizons.

A Multifaceted Health Struggle

In addition to her professional and academic pursuits, Bente faced chronic health challenges. She was diagnosed with Crohn’s disease, an inflammatory bowel condition. She also battled thyroid imbalances that left her body in a fragile and unpredictable state. Despite these challenges, she remained hopeful, seeking alternative therapies such as homeopathy and consulting with specialists to find relief.

The Nose Surgery That Changed Everything

In early 2024, Bente underwent nasal surgery to correct a deviated septum and reduce enlarged turbinates. The procedure included septoplasty and bilateral turbinate reduction performed using coblation, a technique often described as low-risk and intended to improve nasal airflow. However, as in many other cases, the surgery led to immediate complications that progressively worsened over time. Her post-operative care involved the use of corticosteroid nasal sprays, which Bente believed further damaged her nasal mucosa.

Brentes symptoms were severe and unrelenting:

Feeling of excessive airflow through the nose.

A persistent burning sensation in her nostrils. The nasal pain was described as severe and unrelenting.

Severe nasal dryness and crusting, worsened by corticosteroid nasal spray prescribed post-surgery.

Slept with her mouth open due to nasal discomfort, which exacerbated dryness.

A sensation of hyperventilation and inability to sense airflow during exhalation. Hyperventilation was worst at night.

Sleep deprivation, including periods of up to five days without rest.

Constant awareness of breathing, leading to severe hyperfocus on it.

Difficulty focusing on everyday tasks, as even watching television became unbearable.

Systemic effects such as dry eyes, a lump in her throat, painful ears, and burning sensations in her chest and limbs.

These symptoms pointed to Empty Nose Syndrome (ENS), a condition where the nasal passages feel overly open, disrupting normal breathing and airflow sensation.

Experimented unsuccessfully with nose clips, tape, and other methods to block excessive airflow.

Other Symptoms Likely Related to ENS:

Dry eyes and mouth.

Difficulty swallowing and a persistent feeling of a lump in her throat.

Ear pain.

Burning sensations across her chest, arms, and back.

Other Medical Conditions:

Reported her thyroid was "close to being too hard," indicating hyperthyroidism or another form of thyroid dysfunction.

A Desperate Search for Relief

Bente sought help tirelessly, consulting with specialists, including plans to visit Dr. Dixon, an ENS expert in Rotterdam. She explored treatments ranging from nasal ointments and warm beverages to alternative therapies like homeopathy. Despite her efforts, the relief was fleeting or nonexistent. On online forums, she vulnerably shared her experiences and sought advice, expressing both hope and despair.

In one poignant post, she wrote:

"I can’t focus on anything else but my breathing. Sleeping is a BIG issue... I really need help to make it a bit more bearable because now I can’t even focus on the TV. You have to imagine."

Her desperation was palpable as she detailed her struggles with insomnia, dependence on lorazepam, and her declining mental health. She expressed fear, isolation, and a longing for a solution that never came.

Bente Van de Veerdonk - The Final Days

In the ten months following her surgery, Bente’s quality of life deteriorated drastically. Once manageable, her health challenges became insurmountable. By the time of her death in november 2024, she had endured sleepless nights, chronic pain, and the emotional toll of feeling her body "failing in every way." Despite her relentless search for hope and support, her suffering became too great to bear and she ended it herself.

A Legacy of Awareness

Tragically, Bente became the sixth individual in 2024 to take her own life as a result of the unrelenting suffering caused by Empty Nose Syndrome (ENS).

Earlier this year, others suffering from ENS also took their own lives, including Charly Audes (France), Tyler Kuckelman (US), Océane Flavigny (France), Sam Treffry (Australia, 2024), and a 54-year-old Canadian man (name withheld).

Please note that these names are based on reports from three online ENS support groups on Facebook, with approximately 5,000 to 6,000 members. It is important to emphasize that this number does not reflect global statistics, as the actual number of ENS-related deaths worldwide is likely much higher.

Bente's death was a direct consequence of complications from a septum and turbinate surgery performed by her surgeon. How many more lives must be lost before authorities intervene? When will these dangerous procedures be banned, and when will the medical community be held accountable for the harm they cause?

Empty Nose Syndrome - Jack Ackland's Silent Struggle: The ENT Surgeon Who Took Down a Combat Pilot

Jack, a devoted Air Force veteran, served his country with immense personal sacrifice. His struggles began with sinus issues that worsened during flight training. In search of relief, Jack underwent several sinus surgeries over the years. Under pressure from superiors, he also had a turbinectomy performed, a procedure that left him disabled and ultimately ended his military career. Read Jacks PDF file here.

Initially, Jack held onto hope that these surgeries would ease his sinus issues and allow him to continue flying, but the outcome was far from what he had envisioned. Each surgery brought complications and did not ease his pain. Instead, they led to a condition known as Empty Nose Syndrome (ENS). This syndrome occurs when excessive tissue is removed from the nasal passages, leaving the patient with a feeling of nasal obstruction, despite the physical space being open. Jack felt suffocated by the very air that was supposed to relieve him, leading to profound emotional and psychological distress.

The impact of ENS on Jack’s mental health was devastating. He experienced a significant change in personality, becoming withdrawn and depressed. The physical pain he endured was intensified by the emotional toll of feeling trapped in a body that had been butchered. Jack struggled to articulate his suffering to those around him, which only added to his sense of isolation. His family noticed the changes in him—he became irritable and distant, unable to engage with his loved ones. They could only watch as he battled a silent torment, feeling helpless to alleviate his pain.

In the spring of 1961, overwhelmed by his suffering Jack could no longer endure the pain. He left the house with a .22 caliber handgun and never returned. His suicide was not an impulsive act but rather a culmination of years of physical and emotional struggle, as he felt that his condition had robbed him of his dignity and quality of life.

Initially, the Department of Veterans Affairs (VA) ruled that Jack’s suicide was not connected to his military service or his chronic disability. However, his wife, determined to secure recognition of Jack’s struggles and the impact of his service, appealed the decision. In her appeal, she emphasized her inability to support their children on her meager salary of $4,040 a year (equivalent to about $34,000 today) and argued that she was not seeking to defraud the government but simply wanted to ensure her children could pursue their education.

After nearly a year of appeals, the VA reversed its initial ruling and acknowledged the severe impact of Jack's chronic pain and subsequent mental health issues. They ultimately granted his widow a monthly Dependency and Indemnity Compensation payment of $122 (approximately $1,000 today). This decision marked a small victory in recognizing the Empty Nose Syndrome that took Jack's life, though it came too late for him.

Read the full article about jack Ackland here. The article can also be found in this PDF file

Excerpts from the Article:
"In this hospital, I was placed under the care of Major RW Wright, MD, head of the ENT department. I was determined not to undergo surgery on my sinuses, but after considerable pressure, I ultimately consented to a 'submucosal' operation... referring to a submucosal resection that removes the cartilage and bone from the nose."

"Wright hypothesized that a set of tiny nasal bones called 'turbinates' are often infected and could contribute to ear problems. During Jack's first surgery in March 1943, Wright cut nasal cartilage and bone. He then operated on Jack's turbinates, performing a turbinectomy. Not only was too much of the nasal structure removed, leading to a collapse of the nose, but the ends of the turbinates were resected, resulting in excessive airflow due to an enlarged nasal cavity and atrophic rhinitis. Other doctors criticized the surgery... examining him and deeming the operation 'unnecessary.'"

"Majors Wilucki and Neff in Tucson made very complacent remarks about the well-done work on my nose and expressed doubts about my ability to continue flying but said I deserved a chance to try, Jack recalled in his letter from March 1952. Jack did indeed try, and he failed."

"The symptoms were the same as before hospitalization in Santa Ana, and the pain was exacerbated by flying... The symptoms were so severe that he was unable to fly. Jack was grounded, demoted to private with 'no prejudice,' and sent to Amarillo Air Force Base for assignment," he wrote in his 1952 letter.

Len writes: "I now knew the details of his surgery, but I still had a significant unanswered question: why did Wright, an experienced surgeon, perform such a radical operation that left my father too disabled to continue his service? Did he, in the eyes of other doctors, botch the surgery? Were his resections intentional or the mistakes of an overworked military surgeon?"

"While I could not determine Wright's surgical rationale for my father, the results of the operation are indisputable. I asked Dr. Robert M. Meyers, an ENT professor at the University of Illinois in Chicago, to review the details of Jack's surgery and its consequences. Meyers stated that surgical procedures in the 1940s were 'performed coarsely compared to today.' Today, he said, Jack's condition would be referred to as 'Empty Nose Syndrome.'"

"In November 1946, he was hospitalized for sinusitis and streptococcal sore throat... resulting in 'specific arthritic infection and acute rheumatic fever with almost septic temperatures and significant swelling in each joint, to the point that his wife did not recognize him.' Jack wrote, 'It is thanks to the care of Dr. Brenann and his colleagues... that I finally pulled through, and on Christmas Day, my wife was informed that I was expected to live.'"

"After 1946... Jack filed a claim with the VA for an increase in his disability rating, seeking more benefits. He and his civilian doctors argued that the chronic bronchitis caused by the aftereffects of his sinus issues should be considered alongside the disability for sinusitis. The following September, the VA rejected his claim... His unsuccessful appeal to the VA included a supporting letter from Dr. E.R. Fenton of Washington: 'Mr. Ackland came to see me on December 31, 1943, and I have seen him regularly since. He has constant drainage from his posterior sinuses and an acute bronchial cough from bronchial pneumonia and pleurisy. He has been thoroughly examined... and there is nothing we could do to clarify this situation. Following these infections, the patient has suffered from infectious arthritis. In my opinion, the disability is permanent and total. I have recommended his retirement from official duties and that he seek a warm, dry climate in which to live.'"

Jack writes: "It is often necessary for me to lie down immediately after work so that I can show up the next day... However, violent headaches, many sore throats, arthritis attacks, weight loss, general debility, and sensitivity to pneumonia and similar respiratory illnesses are all the result of my disability."

His colleagues write: "He often seemed on the verge of collapsing when he left the office to go home or to the hospital... to be treated. There were times when the pain brought him down, and Mrs. Ackland had to come and drive him home." Jack "was hospitalized again in March 1961. This time, he was placed in isolation, which broke his heart as he felt contagious to his family and friends, leading to significant psychological distress... Jack said he felt 'a burden to his family.'"

"On Father's Day, and my brother's sixth birthday, Dad was too ill to accompany the rest of the family to Elitch Gardens amusement park. The next morning, at dawn, Mom woke me and said, 'Len, Len, your father is gone; he didn’t come home, and he has a gun.' It was a .22 caliber handgun he had purchased a year earlier... I jumped out of bed, quickly dressed, and took the little Pontiac Tempest to look for him. He had taken our second car... I drove north for a few miles to our usual shooting spot. Nothing. Then, on the way back, I spotted the Buick in the line of parked cars... a place where he undoubtedly expected a stranger to find him. Instead, it was me."

"Eleven months after Dad's death, the VA reversed its decision. Based on the evidence of the case, the agency clinically noted that Jack's pain had a psychological impact. They 'determined that there was a definite change in personality with behavioral disturbances and psychiatric manifestations symptomatic of an acquired mental disorder that caused psychological distress. This mental disorder existed at the time of the suicide. This mental disorder was recognized as being directly related to the consequences of sinusitis and bronchitis.'"

This article, written in 2018 by Len Ackland, a journalist and the son of a World War II veteran, recounts the journey and suffering of his father, Jack Ackland, who fell victim to Empty Nose Syndrome. The journalist investigates the causes of his father's suicide, who underwent a turbinectomy performed by the same ENT surgeon in 1943, followed by a Caldwell-Luc operation. Jack Ackland aspired to become a fighter pilot but suffered from barometric sinusitis, leading to frontal pressure, neuralgia, and sinus problems. Under pressure from his superiors, Jack underwent a turbinectomy, a procedure that left him disabled and ultimately ended his military career. Len Ackland describes the ordeal his father courageously endured for 18 years until he took his own life in 1962 at the age of 42. Terms such as "atrophic rhinitis," "empty nose syndrome," "submucosal resection," "removal of nasal cartilage and bone," "turbinectomy," "disability," and "psychological distress" are mentioned. Although his disability was linked to these surgeries, he was repeatedly denied the benefits he was owed. Seventy-five years later, what has changed? Turbinectomies are still being performed today. In April 2020, Marcio Goulart committed suicide following a turbinectomy performed two years earlier, during which the ENT surgeon resected nearly all of his turbinates. Marcio Goulart took his life because he could no longer endure his suffering; he was born on October 9, 1988, and was only 32 years old. On the Empty Nose Syndrome Awareness Forum, on April 26, 2020, Mari Garb wrote: "Hi, I come to inform you that the funeral of our dear friend Marcio is scheduled for 3 PM in the state of Minas Gerais in Brazil. May we bring prayers and a lot of light to him and his family in this sad moment of farewell."

The Story of Stéphane Spinhirny: A Cautionary Tale of Rhinoplasty and Empty Nose Syndrome (1982-2013)

Stéphane Spinhirny’s journey is yet another sad story that highlights the consequences associated with rhinoplasty, particularly the development of Empty Nose Syndrome (ENS). Stéphane´s experiences offer valuable lessons for anyone considering such procedures, emphasizing the importance of informed consent and careful selection of medical professionals.

Stéphane Spinhirny ended the suffering inflicted on him by his surgeons in 2013 and is no longer with us. His YouTube account can be found here   View Spinhirny´s PDF file here

Link to  Stéphane Spinhirny´s blog

A Quest for Change

Initially, Spinhirny sought rhinoplasty to address aesthetic concerns and alleviate functional breathing issues caused by a deviated septum. He believed that surgery would enhance both his physical appearance and his overall quality of life. However, as he began his search for a qualified ENT specialist, he encountered numerous challenges that would lead him down a troubling path.

The Surgical Journey
Spinhirny consulted multiple surgeons, each with varying degrees of expertise and reputations. One of the most significant figures in his narrative is Gilles Ayoun, whom Spinhirny describes as “a real idiot to avoid; a liar, incompetent and dangerous.”

Despite his initial hopes, Spinhirny soon realized that many surgeons were more focused on financial gain than on patient care. He stated, “the liberal professions benefit from protection and the right to censor those who do not suit them,” reflecting his frustration with the medical community's lack of accountability. This disillusionment deepened when he received inadequate responses to his concerns about the surgery’s impact on his health.

The Aftermath: Empty Nose Syndrome
Following his rhinoplasty, Spinhirny unfortunately developed Empty Nose Syndrome, a condition that can manifest after nasal surgeries, particularly those involving the turbinates. ENS is characterized by a sensation of nasal obstruction despite clear nasal passages, leading to significant distress. Spinhirny described how the surgery he underwent, which was initially meant to alleviate his issues, instead left him with permanent breathing problems and a profound sense of despair.

His experience with ENS was not limited to breathing difficulties; it also profoundly affected his sleep quality. He reported issues such as insomnia and disrupted sleep patterns, which are common among those suffering from ENS. The inability to breathe comfortably through the nose at night made it challenging for him to achieve restful sleep, exacerbating feelings of fatigue and mental fog. This chronic lack of sleep further impacted his emotional health, leading to increased anxiety and frustration.

Spinhirny recounted how he encountered a troubling pattern with various ENT specialists. Many seemed to dismiss or overlook the complexity of his condition. He noted, “do not believe surgeons who promise you to only touch your septum; it is Russian roulette.” This statement reflects his frustration with the surgical community's understanding of the intricate relationships between the nasal structures and the potential consequences of surgery.

The psychological impact of ENS was severe for Spinhirny. He felt a deep sense of loss and frustration as he navigated the complications arising from what was supposed to be a transformative procedure. The condition not only affected his physical health but also took a toll on his mental well-being. He lamented, “in medical matters, I can say that paranoia is a virtue that saves lives,” underscoring the need for vigilance when undergoing medical treatments.

Health and Psychological Challenges after Septoplasty

Spinhirny's struggles with ENS were compounded by feelings of isolation and misunderstanding. He noted that many medical professionals lacked the empathy needed to address the emotional distress experienced by patients suffering from this syndrome. His reflections on various consultations reveal a pattern of skepticism and disappointment. He recounted encounters with doctors who seemed dismissive of his concerns, stating, “health is a business,” which only heightened his mistrust.

Moreover, the constant discomfort and disrupted sleep contributed to significant anxiety and depression. Spinhirny's quality of life drastically diminished, leaving him feeling hopeless. He described his experience as a nightmare, stating, “I am beginning to believe that French medical schools have fallen to the level of sociology or law schools and that the title of surgeon is obtained through corruption or cheating.” This reflection highlights his disillusionment not just with individual practitioners but with the broader medical system as a whole.

Through his trials, he emphasized the importance of thorough research and careful consideration before undergoing any surgical procedure. He cautioned others against hasty decisions, particularly when dealing with surgeons who do not belong to recognized medical societies, such as the EAFPS, which signifies a commitment to standards in the field.

Quotes from Stéphane Spinhirny´s blog: 

"The person most likely to kill you is not a relative or a friend or a mugger or a burglar or a drunk driver. The person most likely to kill you is your doctor"; Professor Even estimates that 100,000 deaths occur accidentally in hospitals each year; "doctors have a lower intellectual level than the rest of the population; they are stupid, narrow minded, speak in a pseudo-initiate dialect, t, and are prisoners of an autocratic way of thinking that makes them believe that they hold the exclusive truth"

To wrap it up:

The psychological and physical toll of conditions like Empty Nose Syndrome should not be underestimated, and those seeking surgical interventions must be fully aware of the potential consequences of their choices.

Summary:

Name: Stéphane Spinhirny

Gender: Male

Year of Birth: 1982

Year of Death: 2013 (age 30)

Country: France

First Surgery:

Year: October 2011

Surgeon: Gilles Ayoun

Type: Septoplasty

Details: Removal of septal cartilage

Second Surgery:

Year: October 2012

Surgeon: Dr. Miriam Bönisch

Type: Rhino-septoplasty

Details: Reconstruction of the nasal septum using cartilage from the ear, secured with a PDS plate

Surgery Details:

Ayoun removed septal cartilage; Bönisch removed part of the cartilage from 

the ear and sutured it with the rest of the nasal septum via a PDS plate. 

Informed Consent:

Not informed about the potential consequences of the procedures

Symptom Onset:

Immediately following the initial septoplasty

Symptoms:

Constant sensation of nasal blockage 

Dry nose, crusting
Insomnia (required medication for sleep)
Depression
Referred to surgical outcome as a "massacre"

Late symptoms:

Persistent insomnia

Severe depression

Treatments Attempted:

Nasonex

Derinox

Impact on Quality of Life:

Post-operation: Unlivable

Testimony:

Stéphane shared a video testimony documenting his experience 

and symptoms. Watch this video further down.

Family Impact:

Left behind his parents: Father, Denis Spinhirny (police officer), 

and mother, Jeannine Poncin (secretary)

Aftermath: 

Devastating impact on family; raised awareness of ENS

Legal Action:

Filed a complaint with the medical board in 2012 but did not pursue further legal action

Empty Nose Syndrome and the Cost of Cosmetic Surgery: The Story of John Malamos (1967–2010)

John Malamos, United States 1967-2010. Based on Interview Notes with John’s Brother

John Malamos resided in Illinois, United States and lived a vibrant and fulfilling life until he had two cosmetic surgeries on his nose. Then his life took a very dark turn that ultimately resulted in his early death at the very young age of 43. The first cosmetic surgery John underwent with no notable breathing issues. Unfortunately, the surgery was not performed correctly and John had to undergo surgery again. During this revision, the surgeon chose to also reduce his nasal inferior turbinates without explaining the risks of this procedure to John. This unnecessary reduction set off a cascade of health problems including insomnia, dryness, pain, suffocation, anxiety, and depression.

 
John’s brother Thomas shared his story to offer a critical reminder to be aware of ALL of the operations that your surgeon may perform and to explicitly communicate that you want to avoid unnecessary “add-on” surgeries such as the reduction of the nasal turbinates. John went into the operating room thinking he was just getting a revision of his cosmetic surgery and left the operating room with both a revision to the cosmetic surgery AND a reduction to his inferior turbinates. That reduction had nothing to do with his cosmetic surgery and it is almost certain John would still be alive today had the surgeon not added this operation and caused John to get the dreaded Empty Nose Syndrome (ENS).

Before his surgery, John lived life to the fullest and hardly had any worries in his life. He was a passionate motorcyclist who loved traveling to the western area of the United States with his motorcycle friends. He had a steady girlfriend, a circle of close friends, family living nearby, and a satisfying career as an assistant manager at Costco. John was a beacon of warmth and joy in his community— a man whose presence was felt deeply by those around him.

Colleagues and customers alike from Costco remember him fondly. They still share stories of his kindness and exceptional management skills over ten years later when his brother visits the store to purchase items. John had a rare talent for making everyone around him feel valued and appreciated. The hundreds of co-workers who attended his funeral and commented on his obituary serve as a testament to the positive impact he had on so many lives. Below is just a few of the many comments left from his co-workers online. (1)  

“John was one of a kind. The most compassionate and dear friend and boss. I will always remember our talks about life and how many times John helped me to get through rough times. I will miss him dearly.”

Kristin Harbke, October 10, 2010

"I met John when joining Costco in 2002. He always greeted me with an infectious smile and we never failed to share a laugh together. More than just a co-worker; John was a great friend. It's rare to encounter someone as outgoing and compassionate as John. I remained in touch with him over the years and I was extremely saddened to hear of his passing. My thoughts and prayers are with the Malamos family during this difficult time."

Patrick Hayes, October 28, 2010

"I would not be where I am today without John. Not only did he give me the opportunity to work at Costco, but he gave me a second chance at life and always made me smile even on the worst days. He made it a point to ask me how I was doing and really make me feel good about myself. I sincerely miss you and thank you for all that you have given me."

Jeff Wilkalis, August 7, 2011

"John, it´s been so long since you´ve been gone but it seems like yesterday. We all still miss you so much and remember you by sharing memories of you. Life is not the same since you´ve been gone.I miss the way you´d make time to talk to us and help solve our problems of life. Such a caring person. You will always live in my heart forever. Say hello to Audrey,I know she´d be looking for you with open arms. May you continue to rest on and be happy forever. Love Ruth"

Ruth Reynolds, July 10, 2023

John Malamos 1967–2010: A Life Cut Short by Rhinoplasty and Turbinate Reduction Surgery

After the surgery on his nasal turbinates, John’s fulfilling and happy life took a very dark turn. In his efforts to understand why he felt like he was suffocating and unable to sleep for days at a time, he sought consultations at renowned institutions such as the Cleveland Clinic and Mayo Clinic. After traveling with his father hundreds of miles for these consultations he was finally able to get a diagnosis – Empty Nose Syndrome – but neither clinic had treatments to offer nor referrals to doctors closer to home. His hopes were dashed to learn there would be no relief from his immense suffering and that his quality of life would continue to be very low for the foreseeable future.

John became very anxious and deeply depressed as a result of ENS. This worried his family as John had no known mental health issues prior to the surgery. He ended up getting treatment and spending time in a mental health care hospital but this just left him feeling even more isolated and hopeless as the root cause of his problems were physical in nature and not mental. 

In his darkest moments, John tried multiple times to end his suffering. He initially attempted suicide using carbon monoxide gas from his car’s tailpipe but backed out at the last moment. A subsequent failed attempt included trying to hang himself. He finally ended up stealing a revolver after visiting a family member’s house and shooting himself the next day. This resulted in his very tragic and early death. Notably, his family was able to demonstrate to their church that his death was the result of a physical condition that had tortured him severely. This was important so that his burial and services could be performed according to the Greek Orthodox tradition.

Thomas Malamos now shares his brother’s story in the hope of raising awareness and preventing future tragedies. He wants people to understand the severe and avoidable impact that ENS can have on a person’s life. Thomas does not believe that his brother would have had his nasal turbinates reduced if he had been explained the risks of the surgery and been allowed to play a role in the decision-making process. Like so many other friends and family members who lost loved ones to ENS, Thomas wonders why the surgeon operated on John’s nasal turbinates. Was it to make more money? Was it because they hadn’t been trained on the importance of the nasal turbinates during medical school? Did the surgeon lack the skill and precision needed to operate on the rest of the nose without touching the turbinates? Knowing the answer to this questions could help others avoid the same fate as his brother. 

As part of honoring John’s memory, John’s brother shared photographs and videos from happier times—moments filled with laughter, adventure, and the joy of living life fully. These images serve as a reminder of the person John was before his illness took over, reflecting a life that was bright and full of promise. This is how Thomas would like his brother to be remembered by others. 

(1) https://www.legacy.com/us/obituaries/chicagotribune/name/john-malamos-obituary?id=2754254

John Malamos' PDF file can be viewed here  (takes a while to load)

Yaneiv Oz and Empty Nose Syndrome: A Tragic Consequence of Turbinoplasty

Letter from Toni Carroll, mother to Yaneiv. I think I need you to know Yaneiv before his deterioration began after surgery so you can fully understand how drastic it was. Yaneiv was a people person, loved helping with anything however big or small, fantastic friends still together from pre-school days, hard working, loyal, always the joker & had a love of life like nothing I’ve ever known & football, playing it & watching it was his biggest love, strict diet & work outs twice a day. Yaneiv Oz - PDF file

He always said as a teenager that he felt he didn’t feel much of an air flow through one nostril but not insistent about it. When he was 20 whilst doing his compulsory army service he told me the Dr had referred him to Haddasah Hospital to have a small operation, a Polypectomy (1) in his nose which I tried to talk him out of but not because of ENS which we knew nothing about, just because I always believed when somethings surgically touched something else messes up. Yaneiv was adamant that it was nothing & I didn’t understand how uncomfortable it felt bla bla bla... He had the Polypectomy & Rhinoplasty 🤦🏻‍♀️ I only knew this a couple of months ago when my oldest son told me. 

The day after the operation I went to visit Yaneiv & instantly felt something wasn’t right (gut feeling 🤷🏽‍♀️) But brushed it aside as recuperating. Anyway Yaneiv seemed O.K for a while, held down a job, still working out, football matches, signing up for courses of all types (He loved to study all subjects till he found what finally drew him in).

He had dreams, I think around 2 years after surgery started slight aggressiveness, headaches & insomnia ….. He booked a flight to Australia alone, worked at a company with an Israeli guy he met for a year to save money to travel on before returning home. He lived the dream 🙏 Cambodia, Bali, Thailand & partied in Europe …. I was so proud. He was traveling for just over a year & a half.

But It wasn’t the same Yaneiv that returned 😩

He was still playing football at this point & the gym daily but he couldn’t hold down a job because of constant throat infections, migraines, back & forth to Dr’s more tests, more steroids & referrals to Psychiatric help as they told him over & over it was all in his head. 

Yaneiv still had a bit of fight left in him at this point & moved South thinking the humidity would help staying at his Dads. He went to a Psycologist but only once, he tried acupuncture, voice therapy as he though his voice had changed but I think he felt that way because he had to strain so hard to speak, he was awake all night from suffocation & anxiety which left him groggy & catching an hour here & there when he could. 

Everytime we asked what he felt he only said over & over ‘my throat’ 🤷🏽‍♀️. My daughter had a little boy of 4 in her class at kindergarten that kept clearing his throat (Just like Yaneiv) & she offered him water, he brushed it away & told her it wouldn’t help because it feels like a piece of dry steak constantly stuck at the back of my throat. This little boy who’d had the same operation explained it better than my 26 year old son. 

The depression started kicking in, he stopped replying to his best friends messages, he couldn’t play football anymore because of choking, he became sensitive to dairy products & soooooo very tired. I know he joined the Facebook ENS group 5 days before his death, he had contact with one member who I think she helped him finally to get an appointment with an ENS specialist in Israel.

He hung himself the day of the appointment 

His last wish was that we take the surgeon to court & get justice to stop this. My stepsons Mums a lawyer who said she’d take it on, got all the medical documents together but she didn’t follow it through ☹️..... I wouldn’t be able to do it as Yaneiv said so little, refused for me to talk to the surgeon etc. So anyway if I can help to stop this I will try because I owe it to Yaneiv 

I really hope it’s ok Pia 

My mind is still trying to come to terms with this, so my concentration is appalling 🤦🏻‍♀️

Think it’s fantastic what you’re doing xx Best of luck

(1) A polypectomy is a surgical procedure to remove polyps, which are abnormal tissue growths. It is often performed endoscopically in the nose to alleviate symptoms like nasal obstruction and sinus issues

Yaniv Oz facebook   Instagram

Summary of Yaniv Oz's Case:

Name: Yaniv (Yaneiv) Oz

Gender: Male

Year of Birth: 23/7 - 1992

Year of Death: 16/10 - 2018

Age at Death: 26

Country: Israel

Medical Background:

Yaniv experienced partial airflow obstruction in one nostril as a teenager but managed it well. At 20, during his mandatory military service, he underwent a polypectomy and rhinoplasty at Haddasah Hospital. The surgery involved turbinate reduction, but he was not informed of the potential consequences.

Postoperative Symptoms:

Symptoms began to surface gradually, two years after the surgery, including aggressiveness, headaches, and insomnia. Over time, he developed insomnia, throat and vocal issues, dry nose, and frequent ENT infections. His mental health deteriorated, leading to depression and isolation from friends and activities he once enjoyed, like football.

Treatments:

He consulted multiple doctors, underwent various tests, and was prescribed steroids and psychiatric referrals, but his suffering remained unexplained. He attempted alternative therapies, including acupuncture and voice therapy, without success.

Final Days:

Yaniv joined a Facebook group for Empty Nose Syndrome (ENS) just five days before his death, which he attributed to severe psychological distress. He died by hanging, leaving a farewell letter expressing his wish for his family to pursue legal action against the surgeon to seek justice and prevent similar outcomes for others.

Doloretta Ruggeri Lodge: A Tragic Journey with Empty Nose Syndrome

Doloretta “Dory” Ruggeri Lodge was a loving and active woman who led a fulfilling life, devoted to her family and enjoying everyday routines like cooking meals and taking her dog for walks. On December 28, 2018, she underwent a nasal cauterization procedure performed by an ENT (ear, nose, and throat) specialist. Her doctor assured her that it was a simple, risk-free procedure with a quick recovery time. However, this procedure marked the beginning of a series of debilitating health challenges that would ultimately lead to tragedy. See all info about Dory at this PDF

Immediately following the cauterization of her turbinates, Dory began to experience severe and unexpected symptoms. She found herself unable to sleep and felt an unrelenting sensation of dryness and suffocation. She described the feeling as though her nose had “a million little cuts,” a constant pain that made it difficult for her to function. In an attempt to find relief, she returned to the ENT multiple times, yet each time she was assured that everything was fine, and that there was no medical reason for her symptoms. She was advised to see a primary care doctor, who then referred her to other specialists, including a therapist and a sleep expert. Unfortunately, none of these referrals provided answers, and she was repeatedly told that her symptoms were likely the result of anxiety or depression. Dory's store in the video below, listen after 12 min 37 seconds.

Over the course of several months, Dory’s life took a drastic turn. From being a vibrant woman who found joy in family gatherings, she became withdrawn and isolated, reluctant to be around loved ones due to embarrassment over her deteriorating condition. Her symptoms grew progressively worse, with persistent breathlessness, an inability to sleep, loss of appetite, and a sense of hopelessness. She attempted every remedy recommended by her doctors, including anti-anxiety medications, antidepressants, meditation, and even lifestyle changes like exercise, although her lack of sleep made this nearly impossible.

Dory’s desperation led her to search for answers on her own. Late at night, unable to sleep, she scoured the internet for explanations, eventually coming across information about a condition called Empty Nose Syndrome (ENS). ENS is an iatrogenic serious disorder that can occur when the nasal passages lose critical tissue, leading to sensations of suffocation and extreme dryness. Dory recognized her own symptoms in the descriptions she found and finally felt that she had discovered the root of her suffering.

Her discovery led her to a specialist in Los Angeles who was familiar with ENS and offered a surgical option that might alleviate her symptoms. Dory was willing to take the financial burden and emotional risk of traveling across the country, as it was her last hope for recovery. However, shortly before her scheduled surgery, she received a call from the specialist’s office indicating that while the surgery might help, there was no guarantee it would fully restore her to normal health. This uncertainty left Dory feeling hopeless and defeated. She had spent months battling symptoms that were dismissed by doctors, and now even the possibility of relief seemed out of reach.

On the day of her passing, her family found a note in which she expressed her despair and frustration. Her daughter shared that if Dory had received more information about the risks of nasal procedures, or if her symptoms had been taken seriously sooner, the outcome might have been different. Dory’s tragic experience sheds light on the importance of thorough disclosure regarding surgical risks, and the need for medical professionals to recognize and treat Empty Nose Syndrome with compassion and understanding.

Scott Gaffer: A Story of Brilliance, Struggle, and Endurance

Scott Gaffer’s life is a powerful and poignant example of the hidden struggles endured by those with invisible illnesses. Born with a brilliant mind, quick wit, and boundless curiosity, Scott was a talented engineer from Austin, Texas, with a bright future ahead. However, his life was irrevocably altered in 2010 when he got Empty Nose Syndrome (ENS), a debilitating condition that ultimately impacted every aspect of his life.

 

The Development of ENS and the Initial Struggle

Scott’s journey with ENS began after he underwent a turbinate reduction surgery in 2010. As a child, Scott suffered frequent sinus infections and had trouble breathing through one nostril. In addition to his health issues, he felt self-conscious about the appearance of his nose, which led him to seek surgical intervention to improve both his breathing and appearance. Read Scott´s PDF file here

Despite choosing a reputable surgeon and what was supposed to be a conservative approach, Scott experienced unusual symptoms immediately following the surgery. He mentioned feeling as though air was moving too freely through his nose, describing it as similar to “air going through a straw.” Although the surgeon assured him that his nose appeared structurally sound, Scott remained deeply uncomfortable. This moment marked the beginning of a prolonged struggle, as Scott sought solutions and explanations that doctors failed to provide.

Scott’s Online Advocacy and Research

Over the years, Scott became an active participant in the online ENS community, joining forums like the “Empty Nose Syndrome Awareness” group on Facebook. His contributions were invaluable to fellow sufferers, as he shared in-depth accounts of his treatments, experimental therapies, supplements, and medications. Those who interacted with Scott online described him as compassionate, dedicated, and generous in sharing his experiences to help others. Despite his personal suffering, he retained a sense of humor and intellectual curiosity that inspired others in the community.

 

Scott’s commitment to understanding his condition was unwavering. He approached his research with the precision of an engineer, meticulously documenting every treatment and outcome. His contributions showcased his intelligence, thoughtfulness, and desire to make a difference, not only for himself but for others grappling with the complexities of ENS.

ENS: An Invisible Illness with Devastating Effects

Empty Nose Syndrome is particularly challenging because it is an “invisible” illness, meaning there are no obvious physical signs of the suffering it causes. Individuals with ENS experience sensations of suffocation, chronic pain, and difficulty breathing. This makes it difficult for others to understand the intensity of their symptoms, which are, as Scott’s mother described, “agonizing and so far into the ordinary human experience that it’s difficult to accurately describe.”

For Scott, the symptoms of ENS affected not only his physical health but also his mental well-being. His sleep became increasingly disrupted, which led to a cascade of other health issues, including gastrointestinal discomfort, weight gain, and persistent fatigue. Despite his efforts to convey his suffering to family and friends, Scott felt isolated and misunderstood. Outwardly, he appeared to have a promising career and a supportive social network, but the relentless symptoms of ENS made it difficult for him to experience the life he had once envisioned.

A Devoted Son and Loyal Friend

Scott’s mother, Beth Gaffer, shared fond memories of her son, describing him as exceptionally intelligent, funny, and helpful. Scott was the kind of person who brought joy into his home, whether by fixing things around the house or by lifting the spirits of those around him. His mother recalls how he would notice what needed to be done around the home and take it upon himself to make improvements. His friends, too, remember his warmth, humor, and loyalty. Although Scott did not have a large social circle, he maintained close and meaningful friendships, often treating his friends like family.

Beth also recounted Scott’s playful side, mentioning a photo of him humorously trying to dunk a large MoonPie into a glass, capturing his lighthearted nature even in moments of hardship. Scott’s friends missed the laughter and companionship he once brought to their lives, with one friend lamenting that he missed “the Scott I knew and loved.”

Searching for Solutions: A Medical Odyssey

In his quest for relief, Scott sought out numerous doctors, undergoing various treatments and procedures. Initially, he returned to the surgeon who performed his first operation, but he soon grew disillusioned when his symptoms were dismissed as inconsequential. Driven by a need to reclaim his health, Scott sought out ENS-friendly doctors and underwent a second nasal surgery. Despite these efforts, his symptoms persisted, and his frustration grew as he struggled to find answers and effective treatments.

In 2016, Scott traveled to Johns Hopkins for further treatment, hoping for a breakthrough. However, his hope began to wane as he came to the painful realization that his condition might be irreversible. After this period, his family began to notice significant changes in his demeanor, as his once frequent visits and cheerful presence became increasingly rare. He confided in friends and family that he felt like he had lost the healthy, happy life he once knew.

A Private Battle with Mental Health

Scott’s physical struggles with ENS were accompanied by a profound emotional toll. The pain, isolation, and inability to find relief weighed heavily on him. His mother described how Scott became more withdrawn, spending long periods of time in solitude and sometimes ceasing communication altogether. During one visit, his family found him lying on the floor, exhausted and visibly unwell, yet Scott refrained from openly discussing the true extent of his suffering with them. He carried the weight of his illness privately, finding solace only in the support of online communities where others understood his condition.

In his final note, Scott expressed that he was “sick and tired of being sick and tired” and felt left behind as others around him moved forward in life. Watching friends find relationships, start families, and progress in their careers made him feel as though he would never achieve the milestones he once dreamed of. He poignantly wrote, “My health broke before my spirit,” a testament to the immense toll ENS had taken on him.

A Mother’s Message to Those Affected by ENS

In the wake of her son’s passing, Beth has become an advocate for understanding and support for individuals suffering from ENS. She urges friends and family members of ENS sufferers to ask questions, listen deeply, and be present for their loved ones. The journey of an ENS patient can be isolating, as they may hide their suffering to avoid burdening others or because they feel misunderstood. Beth’s message is clear: ENS, like many invisible illnesses, requires empathy and awareness from the people around those affected. The appearance of normalcy often masks profound suffering, and her hope is that others will take the time to understand the realities faced by individuals like Scott.

Legacy and Lessons

Scott Gaffer’s story is a reminder of the silent battles faced by countless individuals who live with invisible illnesses. His courage, kindness, and intelligence touched the lives of those who knew him and even many who didn’t, through his contributions to the ENS community. His life underscores the importance of compassion, especially toward those whose suffering isn’t outwardly visible. His mother’s advocacy, in honor of his memory, aims to shed light on the devastating effects of ENS and to foster a more empathetic world for all who endure such invisible struggles.

Scott’s legacy lives on in the memories of his family and friends and in the ENS community he supported with so much dedication. His story highlights the urgent need for continued awareness, understanding, and support for those with ENS. In honoring Scott’s life, we remember the importance of compassion, patience, and love for those silently fighting their own battles.