Turbinate Reduction Risks – How Empty Nose Syndrome Changed Stéphane Spinhirny’s Life

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 After Turbinate Surgery – The Tragic Story of Marc Bidaux

IN MEMORY OF MARC BIDAUX
Victim of empty nose syndrome (Departed January 23, 2021, France)

Testimony https://www.syndromedunezvide.com/2019/09/temoignage-de-marc-b.france.html

September 17, 2019 , Written by SNVPublished in #Testimonials
I am 42 years old, in a relationship with two children and live in Finistère. My story unfortunately resembles that of many victims of Empty Nose Syndrome, a sad story. About eight or ten years ago, I suffered permanently from a severe nasal obstruction. At the time, I was prescribed many sprays such as Dérinox, "Destop" for the mucous membrane, never to be used for a long period, I paid the price ...). Conclusion: we did not tackle the causes of this obstruction: a blocked nose due to allergies and my condition only got worse.

June 2015 (First surgery: bilateral lower partial turbinectomy):

Tired of this very blocked nose, I consulted several ENT specialists to find a viable solution. With full knowledge of the facts, I had inquired about possible operations as well as their complications such as Empty Nose Syndrome. After two or three appointments, I came across an ENT specialist at the Brest University Hospital , who seemed competent, serious and above all open to dialogue regarding ENT risks. She reassures me and offers me a minimal turbinectomy of a few millimeters, with drawings showing a slight cut of the turbinates, (drawing that I still have). Still worried about the potential risks, I ask her if a turbinoplasty would not be preferable . She dissuades me, an unnecessary operation according to her, claiming that I will be bothered again in two or three years . My nose being really very blocked, after reflection and reassured by the minor cut of my ENT, I accept the operation which goes well according to her. After a few weeks, it is true that I breathe better, especially on the right side.

January 2016 (Second surgery: near total lower turbinectomy):
At the check-up appointment, I told the ENT that I was breathing well on the right side but the left side was still blocked, they decided to do a little additional partial turbinectomy on the left. For me, it was a matter of cutting a little more but not removing everything, as in the ENT's drawings... After the procedure, my left nostril seemed less blocked. However, I was still a little uncomfortable but nothing more, I was breathing better than before, so everything was perfect.

March 2019:

Suddenly and for no reason, my nose became completely blocked for a month and a half. I had completely forgotten my fears about Empty Nose Syndrome and I didn't think about it for a single second. The treatment (corticosteroid, cortisone, spray) certainly unblocked my nose but too much. I had to stop it after three days. Severe pain appeared, as if my nose was pulling and burning. I felt that it was too open, too much unfiltered, unwarmed air was rushing violently when I inhaled. Since then it's been hell, my nose is sometimes congested/blocked, sometimes too open with painful breathing, nasal and nasopharyngeal burning, facial pain, intense fatigue. The worst is the dyspnea which means that I can no longer sleep without medication otherwise I suffocate as if I could not breathe "automatically". (Nocturnal asphyxia ).

Beyond the physical suffering, anxiety and depression are inevitable, how can I live and assume my role as a father, my job in this state ? At work, I have difficulties, no nap possible. I can no longer sleep without medication, no restorative sleep. How can I hold out over time, with this disease which is a priori degenerative? No treatment either , I consulted ENT specialists and several colleagues of the one who operated on me, who told me, and I quote: " I'm not going to invent a disease for you, you have nothing ." Fortunately, others, competent and honest, diagnosed me with Empty Nose Syndrome with a scan to support it showing a resection of 90% of my inferior turbinates .

Since 2015, ENT specialists have observed a degeneration and progressive atrophy of my mucous membrane due to the nasal cavities being too open, but they had no solution or corrective operation to offer me. Possible operations are rare and offer no guarantee of success, such as implants for example. I met a famous professor in Italy who told me: " you were operated on by a very young ENT specialist with no experience. " He did not want to operate on me, it was too risky and advised me to wait a little while and observe the evolution of my mucosa and then contact him again. Soon, I have an appointment in Nice, with a renowned professor, known for his cartilage implants , I am waiting for his diagnosis. Today, I live as best I can. I have lost a lot of my energy, my joy of living. I suffer day after day. the symptoms of this iatrogenic disease. I try to continue to do a little sport, to enjoy my children as best I can. Despite my expressed fears about the complications and risk of SNV, my ENT went ahead, removing all of my turbinates, probably to get his hands dirty. No doubt, I was just a guinea pig and too bad for the consequences...

A LA MEMOIRE DE MARC BIDAUX, victime du syndrome du nez vide( décedé le 23 janvier 2021). (France)

17 Septembre 2019 , Rédigé par SNVPublié dans #Témoignages

J'ai 42 ans, je suis en couple avec deux enfants et vis dans le Finistère.Mon témoignage ressemble malheureusement à celui de beaucoup de victimes du Syndrome du nez vide, une triste histoire.

Il y a environ huit ou dix ans, je souffrais en permanence,d'une forte obstruction nasale.A l' époque, on m'avait prescrit de nombreux sprays tels que Dérinox , « du Destop » pour la muqueuse, à ne jamais utiliser sur une longue durée, j'en ai fait les frais ...).Conclusion: on ne s'est pas attaquer aux causes de cette obstruction : un nez bouché due aux allergies et mon état n'a fait qu'empirer.

Juin 2015 (Première chirurgie: 

turbinectomie partielle inférieure bilatérale)

Fatigué de ce nez très bouché, je consulte plusieurs ORL pour trouver une solution viable.En connaissance de cause, je m'étais renseigné sur les opérations possibles ainsi que leurs complications comme le Syndrome du nez vide. Après deux ou trois rendez-vous, je tombe sur une ORL au CHU de Brest, qui me semble compétente, sérieuse et surtout ouverte au dialogue quant aux risques ORL.

Elle me rassure et me propose une turbinectomie minime de quelques millimètres, avec des dessins montrant une légère coupe des cornets,(dessin que j'ai toujours). Toujours inquiet sur les risques potentiels, je lui demande si une turbinoplastie ne serait pas plutôt préférable .Elle m'en dissuade, opération inutile selon elle, prétextant que je serai à nouveau gêné dans deux ou trois ans.Mon nez étant vraiment très obstrué, après réflexion et rassuré par la coupe mineure de mon ORL, j'accepte l'opération qui se passe bien selon ses dires. Après quelques semaines ,c'est vrai que je respirai mieux, surtout du côté droit.

Janvier 2016 (Seconde chirurgie: turbinectomie inférieure quasi totale) :

Au rendez-vous de contrôle, je dis à l'ORL que je respire bien du côté droit mais le côté gauche est toujours bouché, on décide de faire un petit complément de turbinectomie partielle à gauche. Pour moi, il s'agissait d'en couper un peu plus mais de ne pas tout enlever, comme sur les dessins de l'ORL ...Après l'intervention , ma narine gauche me semblait moins obstruée.J'étais toutefois toujours un peu gêné mais sans plus, je respirai mieux qu'avant, tout était donc parfait.

Mars 2019:
Subitement et sans raison, mon nez s'est bouché complètement pendant un mois et demi. J'avais complètement oublié mes craintes concernant le Syndrome du nez vide et je n'y ai pas pensé une seule seconde. Le traitement (corticoïde, cortisone, spray ) m' a certes débouché le nez mais bien trop. J'ai dû l'arrêter au bout de trois jours.De vives douleurs sont apparues, comme si mon nez me tiraillait et me brûlait .Je sentais qu'il était trop ouvert, trop d'air non filtré, ni réchauffé, s'engouffrait violemment à l'inspiration.

Depuis c'est l'enfer,.mon nez est tantôt congestionné/bouché, tantôt trop ouvert avec une respiration douloureuse, des brûlures nasales et du naso-pharynx, des douleurs faciales, une fatigue intense. Le pire, est la dyspnée qui fait que je ne peux plus dormir sans médicament sinon je suffoque comme si je ne pouvais pas respirer “automatiquement”.( Asphyxie nocturne).

Au-delà des souffrances physiques, l'anxiété et la dépression sont inévitables, comment vivre et assumer mon rôle de père, mon emploi dans cet état? Au travail, j'ai des difficultés, pas de sieste possible. Je n'arrive plus à dormir sans médicaments, pas de sommeil réparateur .Comment tenir avec le temps durée, avec cette maladie qui est a priori dégénérative?

Pas de traitement, non plus, j'ai consulté des ORL et plusieurs confrères de celle qui m'a opéré, qui m'ont dit , je cite: " Je ne vais pas vous inventer une maladie, vous n'avez rien".Heureusement, d'autres, compétents et intègres, m'ont diagnostiqué le Syndrome du nez vide avec scanner à l'appui montrant une résection de 90 % de mes cornets inférieurs.

Depuis 2015 , les ORL ont constaté une dégénérescence et une atrophie progressive de ma muqueuse dues aux cavités nasales trop ouvertes, mais ces derniers n'avaient aucune solution ou opération réparatrice à me proposer.Les opérations possibles sont rares et offrent aucune garantie de réussite, comme les implants par exemple.

J'ai rencontré un célèbre professeur en Italie qui m'a dit: "vous avez été opéré par un très jeune ORL sans expérience..".Celui-ci ne souhaite pas m'opérer, c'est trop risqué et m'a conseillé d'attendre un peu et d'observer l'évolution de ma muqueuse et de le recontacter ensuite.Prochainement, j'ai rendez-vous à Nice, avec un professeur réputé, connu pour ses implants de cartilage, j'attends d'avoir son diagnostic.

Aujourd'hui, je vis comme je peux.J'ai perdu beaucoup de mon énergie, de ma joie de vivre. Je subis jour après jour. les symptômes de cette maladie iatrogène. J'essaie de continuer à faire un peu de sport, à profiter tant bien que mal de mes enfants .Malgré mes craintes exprimées sur les complications et risque de SNV, mon ORL est passée outre, en enlevant la totalité de mes cornets, pour se faire la main probablement. Sans doute, n'étais -je qu'un cobaye et tant pis pour les conséquences...

Risks of Nasal Surgery: Empty Nose Syndrome and the Tragic Case of Sam Treffry

New Departure Due to Empty Nose Syndrome: The Tragic Death of Sam Treffry, Australia (October 1, 2024) 😢⚰️. Fifth for year 2024. See the the original post from Sam's brother here

A Cherished Memory: A Boating Trip with My Brother Sam

Eleven years ago, in 2013, I went to Wolli Creek near Tempe station with my brother Sam. Sam had acquired a boat, and he suggested we row it down Wolli Creek to Nanny Goat Hill. It was a beautiful, sun-dappled day. We played chess, navigated through the mangroves, and arrived at an island where bats slept in trees, and pillars of leaves formed cave-like structures around us. This trip down Wolli Creek is one of my most cherished memories with Sam, captured on video, but now it has become a sad reminder of the loss of my brother. View Sam´s PDF file here

Sam Treffry’s Tragic End: A Battle with Empty Nose Syndrome

Just two days ago, my brother Sam Treffry took his own life. In his suicide note, he revealed that he had been diagnosed with a severe medical condition known as (ENS). This rare, incurable, and extremely challenging disease is well-documented, with many cases of sufferers tragically resorting to suicide. 

Living with ENS: The Hidden Struggle Sam Faced

Sam’s note described his battle with Empty Nose Syndrome. He had to withdraw from his university studies and quit his jobs because he could no longer cope. He struggled to sleep, fell into a deep depression, and withdrew from his family. My brother died at 34 years old. It’s unclear how long he had known about the diagnosis, but it appeared recent, and it triggered a rapid decline in his mental and physical health. ENS is a condition that arises from routine nasal surgeries that remove tissue. Sam had several nasal operations during his teenage years to address sinus issues and correct his septum, which eventually led to this cruel disease.

The Insomnia and Fatigue That ENS Inflicted on Sam

Before his death, Sam had been working in both a hospital and a hotel and was studying a degree in town planning. On the surface, he seemed happy, but he was always tired—a common symptom of ENS due to the insomnia caused by breathing difficulties. My brother was suffering in silence, and the pain drove him to an unimaginable decision. Sam’s suicide has devastated our family. We never knew about his ENS diagnosis and therefore never had the opportunity to help him properly. The silent suffering he endured was incomprehensible.

A Heartfelt Goodbye: A Brother’s Tribute to Sam Treffry

I love you, Sam. I miss you more than words can express. I wish you had reached out to me. I would have done anything to take care of you, ensuring you got the help, love, and care you deserved. But you didn’t reach out, and now you’re gone. I’ll hold on to our cherished memories until we meet again, where I know you’ll be waiting for me. You’ll always live on in my heart, my thoughts, my dreams, and in the tears I’ve shed for you.

Sam’s Story: A Call to Awareness for Empty Nose Syndrome

Will posted in the Group Empty Nose Syndrome Awareness: "I wanted to share Sam’s story. My younger brother ended his life two days ago. His note revealed the hidden ENS diagnosis that had led him to stop working and drop out of university. My family had no idea he was suffering from this condition, which led to a profound shock for all of us. Sam’s life changed after a series of routine nasal surgeries during his teenage years to correct sinus issues and snoring. These surgeries were performed by Dr. Mooney, a doctor later jailed for malpractice and linked to two other deaths during nasal surgery. Recently, this doctor has begun practicing again in Sydney.

The Downward Spiral of ENS: Self-Medication, Depression, and Low Self-Esteem

As a result of the nasal surgeries, my brother fell into a cycle of self-medication, depression, and low self-esteem. His tragic end at 34 years old remains a deeply painful reminder of the horrors of Empty Nose Syndrome (ENS). Although we don’t know exactly how long he had known about his ENS diagnosis, it appears he had only recently been informed, prompting a rapid and heartbreaking decline. Before his death, he had been working in a hospital, studying at university, and seemed outwardly content, despite his constant fatigue, a hidden symptom of his suffering.

Sharing Sam’s Story: Raising Awareness About ENS

I wanted to join this group and share Sam’s story in the hope that it can raise awareness. My brother’s sudden passing was a complete shock, and the fact that we never knew about his ENS diagnosis until it was too late only deepens our sorrow. 

Sam,s departure October 1, 2024 serves as a sobering reminder of the importance of awareness, early diagnosis, and support for those living with this debilitating condition.

Risker med näsoperationer: Dorys tragiska öde efter näskirurgi och ENS

Doloretta “Dory” Ruggeri Lodge var en kärleksfull och aktiv kvinna som levde ett rikt liv, hängiven sin familj och njöt av vardagens rutiner, som att laga mat och promenera med sin hund. Den 28 december 2018 genomgick hon en näskauterisering utförd av en öron-, näs- och halsläkare (ÖNH-specialist). Hennes läkare försäkrade henne om att det var ett enkelt och riskfritt ingrepp med en snabb återhämtning. Men detta ingrepp blev början på en rad förödande hälsoproblem som till slut ledde till en tragedi. Läs mer om Dory i denna PDF-fil

Omedelbart efter kauteriseringen av sina näsmusslor började Dory uppleva svåra och oväntade symtom. Hon kunde inte sova och kände en ständig känsla av torrhet och kvävning. Hon beskrev det som om hennes näsa hade "en miljon små skärsår," en konstant smärta som gjorde det svårt för henne att fungera.

I hopp om lindring återvände hon flera gånger till ÖNH-läkaren, men varje gång fick hon höra att allt såg bra ut och att det inte fanns någon medicinsk förklaring till hennes symtom. Hon hänvisades till en allmänläkare, som i sin tur skickade henne vidare till andra specialister, inklusive en terapeut och en sömnexpert. Tyvärr gav ingen av dessa remisser några svar, och hon fick gång på gång höra att hennes symtom troligen berodde på ångest eller depression.

Se Dorys berättelse i videon nedan, lyssna efter 12 minuter och 37 sekunder.

Under flera månader förändrades Dorys liv drastiskt. Från att ha varit en livfull kvinna som njöt av familjesammankomster blev hon tillbakadragen och isolerad, ovillig att umgås med sina nära och kära av skam över sitt försämrade tillstånd. Hennes symtom förvärrades gradvis – hon kämpade med ständig andnöd, oförmåga att sova, aptitlöshet och en växande känsla av hopplöshet. Hon prövade alla behandlingar som hennes läkare rekommenderade, inklusive ångestdämpande mediciner, antidepressiva, meditation och livsstilsförändringar som motion – men hennes extrema sömnbrist gjorde det nästintill omöjligt.

I sin desperation började Dory söka svar på egen hand. Sent om nätterna, oförmögen att sova, grävde hon djupt på internet och snubblade till slut över information om ett tillstånd kallat Empty Nose Syndrome (ENS). ENS är en allvarlig iatrogen sjukdom som kan uppstå när viktiga nässtrukturer förloras, vilket leder till kvävningskänslor och extrem torrhet. När Dory läste om syndromet kände hon igen sina egna symtom och insåg att hon äntligen hade hittat orsaken till sitt lidande.

Hennes upptäckt ledde henne till en specialist i Los Angeles som var insatt i ENS och erbjöd en kirurgisk behandling som kunde lindra hennes symtom. Dory var beredd att ta den ekonomiska och känslomässiga risken med att resa tvärs över landet, eftersom detta var hennes sista hopp om att återhämta sig. Men strax innan den planerade operationen fick hon ett samtal från specialistens mottagning – de förklarade att även om ingreppet kunde hjälpa, fanns det inga garantier för att hon skulle återfå sitt normala liv. Denna osäkerhet slog hårt mot Dory, som redan i månader hade kämpat med symtom som läkare avfärdat. Nu kändes även möjligheten till lindring utom räckhåll.

På dagen för sin bortgång fann hennes familj ett brev där hon uttryckte sin förtvivlan och frustration. Hennes dotter berättade att om Dory hade fått mer information om riskerna med näsoperationer, eller om hennes symtom hade tagits på allvar tidigare, hade utgången kunnat bli en annan. Dorys tragiska öde belyser vikten av att läkare ger noggrann information om kirurgiska risker och att sjukvården erkänner och behandlar Empty Nose Syndrome med empati och förståelse. 

Empty Nose Syndrome (ENS) Tragedy: Scott Gaffer's Struggle and Legacy

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.