This strange so-called “empty nose” syndrome that drives people to suicide

Article about Empty Nose Syndrome from the French newspaper: 

MIDI LIBRE N° 2766a | Ven. 22 - Sam. 23 avril 2016

A seemingly innocuous operation, carried out to relieve the breathing difficulties of patients who suffer in particular from allergies, has transformed their lives into hell. Imagine losing your natural breathing. IThat instead of a regular, peaceful, unconscious movement, you always have the impression of having to think about breathing, to force yourself to draw air. That in addition to this disorganization of your breathing, you feel burning in the nose, a feeling of suffocation, shortness of breath. And the doctors tell you that your illness is imaginary, that it does not exist, that you are simply “tired”.

This is what happened to Brett Helling, 36, as reported by Buzzfeed in a long investigation into this strange illness, which we call "Empty Nose Syndrome." A bit like the Kovaliov in the novel The Nose by the writer Gogol, his organ had flown away. But contrary to the college assessor's bad dream, his nose never returned "as if nothing had happened, to its old place." Patients who suffer from this syndrome have generally undergone a turbinectomy: a seemingly innocuous operation that involves removing the "turbinates" of the nose, two organs that secrete moisture and which some doctors recommend removing when the patient complains of chronic respiratory discomfort. Suffering like his brother from allergies, Brett Helling ended up, after yet another series of attacks of stuffy noses and repeated colds, by letting himself be convinced by a seemingly innocuous operation: a septoplasty, which consists of correcting a deviation of the nasal septum. But the doctor saw fit to add to this, without telling him, an ablation of these famous turbinates.

My life became hell The summer following the operation (which took place in February 2014), Brett Helling was a shadow of his former self. He no longer went to rehearsals with his music group, he was no longer able to work as before, locked himself in his house. In October, exhausted, he went to the emergency room, begging the nurse and the medical team for surgical intervention:

“I need to sleep or I will die.” No one had heard of empty nose syndrome. Depression was diagnosed and the head of the ENT department refused. to receive it. From that moment on, it was a spiral. Brett Helling did not take the medication given to him, convinced that he was not suffering from depression, but from empty nose syndrome. He stopped eating, sleeping, showering. And all he did was talk out of his nose, like a scratched record player, according to his friends and relatives. In December, his relationship broke up, he returned to live with his parents where he spent his time with kleenez in the nose.

“I can’t live like this. My life has become hell,” he told his parents. In February 2015, almost a year after his surgery, he parked on the Jeremiah Morrow Bridge, one of the highest in the state of Ohio. And he threw himself from the top of these 73 meters.

“I have the impression that I am slowly dying,” also says André Gourbillon, a retired nuclear technician, interviewed by L’Obs who conducted an investigation into this disease in 2012.

Patients who suffer from this syndrome may have intense pain, experience hyperventilation, nasal dryness, and completely lose their sense of taste and smell. They have sleep problems and face violent depression. He ended up finding at least a way to sleep, thanks to a noisy machine that channels the air and moistens his nasal walls. “He gave up neuroleptics, which made him feel like he was on another planet. But lives with permanent facial pain,”

Approximately 2 to 5% of patients who undergo turbinectomy suffer from complications. Some ENTs even put forward the record figure of 14%. A victims' association was created in France in 2011, which helped launch around twenty legal proceedings. Nine written questions were asked by MEPs on this subject. Since the creation of the association, at least two of its members have committed Suicide.

Turbinectomy: Testimony of Ludovic Sery (1980-2011)

Excerpt from the book "No Doctor, I'm not crazy", The dangers of Turbinectomy (Eric Canaux) 

Testimony of Ludovic Sery 1980-2011

I called Ludovic's mother. It was a difficult moment for both of us—especially for her, as she is inconsolable. I understand what she feels. For me, it was also hard, as I have been in Ludovic’s position more than once, though I never reached my goal of ending my suffering. I have seen the same pain and helplessness in my parents' eyes that I now heard in Ludovic’s mother’s voice. 

"Ludovic was an active and athletic young man, born on Réunion Island. He was a good son." His mother wanted to add to this testimony to show "how much he loved life before his illness and how appreciated he was by everyone."

So that he is not forgotten, here is his testimony, written before the tragedy. 

My Story with Empty Nose Syndrome

I have been suffering from Empty Nose Syndrome (ENS) since 2002, and this blog is my testimony of how I discovered the syndrome and what I have done to cope.

ENS is a condition of iatrogenic origin, meaning it’s caused by a medical error or inappropriate recommendation. In my case, it was due to a procedure performed by an ENT surgeon—a bilateral turbinectomy, which can be partial or total. This surgery is a risky practice, used by ENTs to treat chronic rhinitis or recurrent nasal congestion, often resulting from allergies, hormonal issues, or a deviated septum. For these specialists, the solution for swollen turbinates is to remove them.

However, these surgeons act more like butchers than doctors, interfering with the turbinates without understanding their role. They consider it a minor procedure, yet it is far from harmless. ENTs who perform these surgeries downplay the importance of the turbinates, removing them fully or partially and leaving patients with lifelong disabilities.

The Role of Turbinates and the Impact of ENS

Few ENTs in France understand the complex role of turbinates. In the United States, a report was published stressing their importance and banning this type of intervention after a significant number of victims were affected. According to Dr. Steven Houser, “our nose is our lungs.” Turbinates are essential; they regulate the air we breathe through their structure. Removing or altering them leads to severe breathing issues because it disrupts airflow. Turbinates also warm inhaled air, an essential function that allows filtration and humidification, crucial for managing dust, cold air, pollutants, and microbes.

Additionally, turbinates contain airflow sensors directly connected to the brain, signaling the amount of air entering the lungs. With altered or removed turbinates, the damage is extensive—it’s like a car with a defective airflow sensor.

Some ENTs in France have acknowledged the errors of their colleagues, trying to support victims. Some attempt “repairs,” but no procedure is fully effective. From the many reports of implant rejection, I cannot recommend them, except possibly ear cartilage grafts, although there is not enough evidence to advise definitively.

My Own Experience with ENS

In 2002, I underwent a bilateral turbinectomy, and a few months later, I developed ENS. My nose frequently became inflamed, much more than before the surgery. I started to regret this supposedly “risk-free” procedure. My mouth and throat were constantly dry, I was always thirsty, and I struggled to breathe. I thought maybe the anesthesia had weakened my heart, and exercise would help. When rhinorrhea (nasal drainage) began, I hoped it was a temporary side effect. But my symptoms only worsened—nightly headaches, abnormal discharge, foul odors, and repeated inflammation. My condition deteriorated with dyspnea and escalating discomfort—I preferred my allergic rhinitis, which only troubled me four months a year. Now it was a nightmare year-round, especially during winter.

A year after surgery, I went back to the ENT to complain. To him, I was exaggerating, being “too sensitive to temperature changes,” “fragile.” He prescribed medications to boost my immune system, assuring me his procedure was a success.

No ENT doctors I saw in the region understood my complaints. A general practitioner and one ENT admitted it could be a therapeutic mishap, but provided no solution beyond anti-inflammatories and saline nasal rinses. I was always exhausted. My declining health led to severe depression, and I was prescribed anxiolytics, antidepressants, and sleeping pills.

Struggles and Searching for Relief

I made my first suicide attempt in 2005. They “locked me up” in a psychiatric facility in the south for a month. I won’t go into detail here—I only stayed two weeks before escaping and trying to drown myself.

This situation affected my job, where my employer grew frustrated with my frequent absences. I was laid off in 2008.

I had now discovered ENS by chance on the Internet, typing “turbinectomy warning” into Google and finding an article titled “Turbinectomy: Beware.”

Through contacts, I learned of a surgeon in Paris who could perform acrylic implant surgery. I had nothing left to lose. I contacted him, and he operated on me on June 25, 2009. After two suicide attempts, I was willing to try anything to break free from this misery.

This surgery is recent, and I cannot wholeheartedly recommend it, as I’ve heard of cases of rejection. But since the operation, I’ve noticed a slight improvement: less extreme dryness in my throat, less air flowing through my nose. Headaches and inflammation have also decreased.

Many people suffer from ENS without knowing it, and few doctors and specialists understand it. My condition improved gradually, influenced by multiple factors.

The Loss of my Son - Ludovics mother

In 2005, he was hired at a fruit factory, working tirelessly for four years. Occasionally, he needed short sick leave due to severe headaches, purulent rhinitis, and dyspnea. But he was diligent, quickly returning to work. Unfortunately, in late 2009, he was laid off, a huge blow to someone who longed to be active. A few months later, he took a vocational training course for warehousing, passed his three licenses, and successfully earned his certification in April 2010.

Soon after, he got a forklift job at another fruit plant. However, the conditions were harsh, with old machinery, rough terrain, and demanding supervisors. He only lasted a month and a half, having injured his back. With a spinal condition, he could no longer do the job he enjoyed. He fought for a year, trying to recover. He attended around 30 physiotherapy sessions, swam, and took painkillers prescribed by his doctor, but nothing relieved him. He even tried mesotherapy in May 2011, but nothing truly helped. I still remember his drawn face, pale and covered in cold sweat, expressing a deep sadness and bitterness. His despair was evident as he struggled, unlike other young men his age. One day, he told me, “Mom, I’ll never be able to do the work I wanted.” I tried to reassure him, saying it would get better eventually, just as his father’s back issues had healed.

He took care of our home and repainted the doors. But without showing it, he couldn’t bear it anymore. One July morning in 2011, he left us suddenly, having lost faith in life. This is where the surgeon led my son by recommending this surgery, even though we had only sought relief for nasal congestion due to allergies. My son was a test subject for this surgeon… His last wish was to let the world know that he was a victim and that these surgical practices should stop to prevent others from suffering the same fate.

His adult life was stolen by this doctor. He never had the chance to experience happiness. He suffered greatly, and so did his family. I will never accept this tragic loss. I weep bitterly, bearing the guilt for taking him to that doctor. This is why I want to pay tribute to my beloved son, whom I will never forget, by sharing these words in your book as a testimony. Thank you.

Source: https://www.syndromedunezvide.com/2017/10/a-la-memoire-de-ludovic-victime-du-snv.html
His blog: http://serylu.unblog.fr/2009/09/19/mon-temoignage-sur-le-snv/