Empty Nose Syndrome Tragedy: In Memory of Sylvain Barthelemy

Testimony in memory of Sylvain Barthelemy 1969-2007

Life Lost to a Modern-Day Lobotomy -Turbinate Reduction
My name is Ludovic, and I wanted to write this testimony in memory of my brother, who passed away on April 11, 2007. This is also an expression of solidarity with those who suffer from empty nose syndrome and on behalf of the association "Empty Nose Syndrome France," of which I am a member. Although I do not suffer from this syndrome personally, I have been indirectly affected by it.

In July 2005, I spoke with my brother, who informed me he was going to have surgery for a deviated nasal septum, scientifically known as a septal deviation, requiring a septoplasty. At the time, he frequently complained of nasal obstruction. A sinus X-ray in December 2004 revealed "discreet mucosal thickening in the lower part of the left maxillary sinus and in the outer part of the right maxillary sinus, very partial filling of ethmoidal cells, and deviation of the nasal septum to the left." Following this, my brother consulted an ENT specialist. After reviewing my brother's entire medical file multiple times, I found no treatments or interventions aimed at clearing the sinuses. The ENT recommended a septoplasty. My brother signed an informed consent form for anesthesia and was only given information about the septoplasty, not being informed that it would be associated with a turbinectomy. Consequently, he was unaware of the risks and complications related to this procedure.

I also suffer from chronic nasal obstructions during certain times of the year and have a septal deviation due to an accident. I had consulted an ENT specialist shortly before my brother's first operation. This specialist informed me about septoplasty but advised against it due to potential debilitating effects afterward. I later understood what he meant, but he couldn't elaborate since empty nose syndrome is not recognized by the scientific community or ENT specialists in France, even though it is acknowledged in other countries. Many ENT specialists are aware of the problem.

On August 8, 2005, my brother Sylvain underwent a septoplasty with a complete bilateral turbinectomy of the inferior turbinates. The term "turbinectomy" did not appear in the preoperative medical file but was later added to the operating room sheet, seemingly by another person, as it was written differently. The following words were added: “turbinectomy and concha bullosa opening x 2.” These notations were added during or after the operation.

In 2006, my brother began to suffer from severe headaches, anxiety, significant ENT pain, frequent sinusitis, sleep problems, and fatigue. I noticed changes in his behavior: aggressiveness, anxiety, nervousness, depression, and a feeling of being attacked without paranoia. He struggled with professional and leisure activities like skiing or paragliding due to altitude changes causing him pain, and he avoided dusty or dry places. He even asked me not to make a fire in my fireplace when he visited.

My brother had a successful professional life, a good income, and two children. Realizing that his problems stemmed from the operation and that his condition was worse than a blocked nose or chronic sinusitis, he sought other specialists. Another doctor suggested reconstructing the nasal cavity by removing the middle turbinates to graft them in place of the lower turbinates. My research found no scientific literature on such an operation, rendering informed consent void due to the lack of recognized documentation. This operation went poorly, resulting in a hemorrhage and rejection of the graft. By December 2006, my brother was left without lower and middle turbinates. I believe he was used as a guinea pig.

Complications continued: permanently infected sinuses, unbearable pain, loss of libido, leg pain, excessive fatigue, reduced sleep (3 to 4 hours per day), night terrors, significant depression, claustrophobia, and a stronger suicidal tendency. He had to use damp cotton balls in his nostrils to limit and humidify the incoming air.

In his last operation, meant to clear the sinuses in an emergency at a university hospital, the report noted a "disabling surgical after-effect" instead of "empty nose syndrome," which would be recognized today. After this operation, my brother was on high-dose opioids until his death.

On March 22, 2007, my brother called me, saying he was going to end his life, though I had seen him the day before. I immediately went to Annecy and to his home, where my sister-in-law was waiting. At the police station, a lieutenant requested to locate my brother via his cell phone, which he fortunately had not turned off. With the help of the police, we found him alive the next day, wandering the streets of Annecy.

Following this, I had to have him admitted to specialized care against his will (HDT) to find solutions and give my parents and me peace of mind. This decision was incredibly difficult and remains the hardest I've ever had to make. After a week, the specialized care center released him at my father's request due to important medical and professional appointments.

On April 4, 2007, my brother called my father again, expressing his suicidal intentions. He did not call me, wary of my proximity. My father immediately contacted the gendarmerie and firefighters, who intervened just as my brother was about to jump off the Caille Bridge, spanning a 250-meter chasm.

However, at the hospital, no one was available to sign an HDT. My sister-in-law was absent, I was unaware, and my parents lived in Rouen. My brother was released the next day. An HDT cannot be arranged by phone and must be signed on the day of immediate hospitalization.

My brother ended his life on April 11, 2007, at the same place where he had been caught during his second attempt, leaving behind two small children. For a while, I was angry with him, but looking back, I realize that I might have done the same thing, given the pain and the irreversibility of his condition.

In his last days, my brother was completely disconnected from reality due to the large doses of opioid tablets he took for pain (strong opioids in his case). I was very angry with these "doctors"; today, I feel nothing but disgust towards them. He did not commit suicide; he ended his physical suffering, suffering that was unjustly inflicted on him.

My father and I filed an appeal with the CRCI. These two people were found responsible for the suffering inflicted. My nephew and niece received a posthumous, derisory sum, which I describe as shameful, given the loss of their father. In fact, this is the amount my brother should have received if he had pursued this during his lifetime, a sum awarded for the suffering inflicted and the "inconvenience" caused. The CRCI refuses to establish a causal link between these two procedures and my brother's death.

Two investigations were commissioned by the CRCI. During the two commissions of inquiry that my father and I attended, I noticed several things. The death of my brother did not seem to affect these two individuals or their colleagues present to assist them during these investigations, who were of course commissioned by their insurance companies.

I doubt they even realize that their actions led a person to end his life. I ask myself: how do they look at themselves in the mirror in the morning? Do they have any problems with their conscience? I think they don't, since they still practice this debilitating “excision.”

They don't have any problems of conscience because, for them, they didn't force my brother to jump. How can a psychiatrist, a "professor," not understand that a person sleeping three hours a day under powerful opioid treatment, suffering excruciatingly, would eventually want to end it? A ten-year-old might understand that.

How are "professors" and "doctors" incapable of linking my brother's suicide to his condition, caused by the successive interventions of these two individuals, especially when they know very well the function of the nasal turbinates from their years of study? It wouldn't take long for a sane person with minimal intellectual background and very little study to figure it out.

In conclusion, I refer to a speech by Xavier Bertrand, the Minister of Labor, Employment, and Health, at the General Assembly of Health: "A person should not leave a hospital more damaged than when they entered." In my brother's case, he was indeed left more damaged by these two interventions.

What I can finally say is that, faced with this problem, many ENT surgeons stand together in a sacred union, refusing to admit the reality and their errors. Despite this operation dating back more than 100 years, no study exists to see the damage. Yet, the reality is clear: empty nose syndrome still affects people, many of whom are in poor condition or no longer here to talk about it.
Ludovic. SNVF Association November 5, 2018 1:25 p.m.

Source: https://www.syndromedunezvide.net/temoignages/mon-frere-s-appelait-sylvain

Original text in French.

Mon frère s'appelait Sylvain

Je m’appelle Ludovic, et je tiens à rédiger ce témoignage en mémoire de mon frère, décédé le 11 avril 2007, par solidarité envers ceux qui souffrent du syndrome du nez vide et pour le compte de l’association "Syndrome du nez vide France," dont je fais partie. Je ne souffre pas personnellement de ce syndrome, mais j’y ai été confronté indirectement.

En juillet 2005, j’ai discuté avec mon frère, qui m’a informé qu’il allait se faire opérer pour une cloison nasale déviée, une déviation septale nécessitant une septoplastie. À l'époque, il se plaignait souvent d’obstruction nasale. Une radiographie des sinus en décembre 2004 avait révélé un « discret épaississement muqueux dans la partie inférieure du sinus maxillaire gauche et dans la partie externe du sinus maxillaire droit » ainsi qu’un comblement partiel des cellules ethmoïdales et une déviation de la cloison nasale à gauche. Suite à cela, mon frère a consulté un spécialiste ORL, qui lui a proposé une septoplastie.

Mon frère a signé un consentement éclairé pour l’anesthésie, mais il n’a été informé que pour la septoplastie, sans mention de l’association avec une turbinectomie. De ce fait, il n’a pas été informé des risques ou complications liés à cette turbinectomie.

Personnellement, je souffre de manière chronique d’obstructions nasales à certaines périodes de l’année et ai une déviation septale. Un spécialiste ORL m’avait informé qu’il existait une intervention chirurgicale pour corriger cette déviation, la septoplastie, mais m’a conseillé de ne pas la faire, en raison des effets potentiellement invalidants. J’ai compris bien plus tard ce qu’il voulait dire, bien que le syndrome du nez vide ne soit pas reconnu par la communauté scientifique et ORL en France.

Le 8 août 2005, mon frère Sylvain a subi une septoplastie accompagnée d’une turbinectomie bilatérale complète des cornets inférieurs. Dans le dossier médical préopératoire, le terme "turbinectomie" n’apparaît pas. Ce mot a été ajouté sur la fiche du bloc opératoire, par une autre écriture, avec les mots « turbinectomie et ouverture concha bullosa x 2 » ajoutés pendant ou après l’opération.

Quelques mois plus tard, en 2006, mon frère a commencé à souffrir de céphalées sévères, d’angoisses, de douleurs ORL, de sinusites fréquentes, de troubles du sommeil, et de fatigue. Son comportement changea: agressivité, anxiété, nervosité, dépression, sentiment d’être agressé. Il renonça à des activités comme le ski alpin ou le parapente, les changements d’altitude lui provoquant des douleurs. Il évitait les endroits poussiéreux ou trop secs, et me demandait de ne pas allumer de feu dans la cheminée lorsqu’il me rendait visite.

Mon frère avait une bonne situation professionnelle, un bon salaire, deux enfants. Réalisant que ses problèmes découlaient de cette opération, et que son état dépassait les symptômes d’un nez bouché ou d’une sinusite chronique, il consulta d’autres spécialistes. Un médecin lui proposa une reconstruction de la cavité nasale en greffant les cornets moyens pour remplacer les inférieurs. Cependant, mes recherches n’ont trouvé aucune mention de cette opération dans la littérature scientifique, ce qui invalide le consentement éclairé. Cette opération échoua, entraînant une hémorragie et un rejet de la greffe. Mon frère se retrouva sans cornets inférieurs ni moyens en décembre 2006, et je suis convaincu qu’il a servi de cobaye.

À la suite de cela, les complications s’aggravèrent: sinus infectés en permanence, douleurs insupportables, fatigue excessive, sommeil réduit à 3-4 heures par nuit, terreurs nocturnes, dépression profonde, claustrophobie. Il était obligé de placer des cotons humides dans ses narines pour limiter et humidifier l’air entrant. Lors d’une dernière opération en urgence pour dégager les sinus, le rapport mentionnait une « séquelle chirurgicale invalidante » au lieu du terme "syndrome du nez vide" aujourd'hui reconnu. Mon frère fut alors placé sous traitement morphinique jusqu’à son décès.

Le 22 mars 2007, mon frère m’appela pour m’informer de ses intentions suicidaires. Je me rendis à Annecy et, avec l’aide de la police, nous le retrouvâmes errant dans les rues. Contre son gré, je le fis admettre en soin spécialisé, afin de gagner du temps pour trouver des solutions. Cette décision, difficile et déchirante, est la plus douloureuse que j’aie eue à prendre.

Au bout d’une semaine, le centre de soins le libéra à la demande de mon père, qui pensait à des rendez-vous médicaux urgents. Le 4 avril 2007, mon frère téléphona à nouveau, annonçant son intention de se suicider. Il tenta de sauter du pont de la Caille, mais les pompiers intervinrent juste à temps. Cependant, il n’y avait personne pour signer une hospitalisation d’office. Mon frère ressortit le lendemain et, le 11 avril 2007, il mit fin à ses jours au même endroit, laissant derrière lui deux jeunes enfants.

Aujourd’hui, je ne ressens plus de colère mais du dégoût envers ces médecins. Mon frère ne s’est pas suicidé; il a mis fin à des souffrances infligées injustement. Mon père et moi avons déposé un recours en CRCI. Les deux médecins ont été reconnus responsables, et mes neveux ont reçu une somme dérisoire, bien loin de refléter la perte de leur père.

Lors des deux enquêtes de la CRCI, il était évident que le décès de mon frère n’affectait ni les deux médecins concernés, ni leurs confrères présents pour les assister. Comment ces personnes peuvent-elles se regarder dans le miroir en sachant qu’une vie a pris fin à cause de leurs actes?

En conclusion, comme l’a dit le ministre Xavier Bertrand: « une personne ne doit pas ressortir d’un hôpital plus abîmée qu’en entrant. » Mon frère est ressorti bien plus abîmé de ses interventions. Face à ce problème, les chirurgiens ORL font bloc, refusant de reconnaître la réalité et leurs erreurs, même si le syndrome du nez vide touche encore des gens, dont beaucoup sont dans un état pitoyable, ou ne sont plus là pour en parler.

 Association SNVF  05 novembre 2018 13:25