ENSIA

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So far ENSIA has created 49 blog entries.

Valley Events Founder’s Health Problems (due to ENS) Could Spell the End of Popular Service (News, Canada)

James Skinner

“Now his ongoing health concerns are compelling him to give up a volunteer service that is uber important to our community. James started the Valley Events website listing of everything going on in the wider Valley several years ago. It has become the go-to place to find out what’s happening.

[…] It’s been almost a decade since he had to leave behind his job as a senior software designer at Nortel in Ottawa. Moving back to the Valley, it was obvious when I met him in 2008 that his health was compromised.”

“I sat down with James in 2008 because he had spent years waiting for the medical system to help relieve his breathing and sleep problems. It’s been a long, long wait. […] Most of his efforts at self-education were dismissed. His symptoms were misdiagnosed or ignored.”

Read article: click here

Source: Kings County News, Canada

Author: Wendy Elliott

2017-08-30T17:22:22+00:00

ENS: When Patients Are Left ‘Suffocating’ After Routine Nasal Surgery (ABC News, Australia)

EVS

“When Erika Schneider had surgery to address a common nasal complaint in the early 2000s, she was expecting a relatively speedy recovery. The operation to fix her allergy symptoms and snoring was fairly routine. It was an easy outpatient surgery, to correct a deviated septum — the thin bony structure in the centre of the nose. 

  • “I wasn’t going to have to stay overnight. I just didn’t think it was going to be that big of a deal, and I was not told of any complications,” she said.

Unfortunately what followed was more than a decade of pain, discomfort and sleepless nights — underpinned by an alarming sensation. To this day, Ms Schneider feels like she can’t breathe,

[…]”click here to continue reading.

Read (full) article: click here

Source: ABC News (Australia)

Authors: Joel Werner & Tegan Osborne

2017-08-30T17:22:22+00:00

ENSIA’s Associate Membership in EURORDIS!

Member of EURORDIS

We are proud to announce that ENSIA has become a Member Association of EURORDIS (European Association of Rare Diseases) as of July 2016.

EURORDIS advocates for patients, promotes health care policies and services for people living with rare diseases, and advocates for policies that promote the development of medicines and therapies.

ENSIA’s status as a Member Association means that the ENS community will be represented by EURORDIS and this representation will serve as an additional voice for ENS in Europe.

2017-08-30T17:22:22+00:00

Empty Nose Syndrome: Explaining Nasal Aerodynamics (Website Recommendation)

Website “Empty Nose Syndrome Aerodynamics” was created by one of ENS patients and is devoted to explanation of ENS and nasal aerodynamics – click here to read more

“There is this thing called Empty Nose Syndrome and it’s REALLY Bad. I don’t know what your issue is but you’ve already had enough removed, don’t do any more” (Anonymous doctor from Group Health, Redmond WA 2008)

ENS Aerodynamics (PE)

“I work in Aerospace Engineering and after being diagnosed with “E.N.S.” I had seen many studies regarding the computer modeling of airflow patterns through the nose and I realized that I had the scientific capabilities to do my own CFD (Computational Fluid dynamics) aerodynamics study regarding the surgically altered airflow through my nose. I am a unique patient in that since I work in engineering and I collect and analyze data for a living, I have a meticulously detailed and well documented case of E.N.S.

I will be presenting sleep data, CT scans and “CFD” flow models (based on my CT scans) which document my condition before and after 2 destructive surgeries. I will also be releasing CFD results that show the improvement I saw after getting nasal “Implants” at some point in the near future. I have decided to share my research and my personal story which documents my rather debilitating condition in the hopes that it advances the understanding both among doctors and patients regarding the inherent dangers and risks associated with “aggressive” nasal surgeries. I hope to once and for all dispel some of the controversy and misconceptions regarding ENS to this very day by providing solid fact based measurable evidence, even regarding how and why ENS destroys one’s ability to sleep. Far too often ENS symptoms are referred to as “subjective” by doctors who cannot seem to measure the damage which (besides dry sclerotic or missing tissue), is largely internal but is in fact very real and gravely serious.”

 

2017-08-30T17:22:22+00:00

La Sindrome del Naso Vuoto: diagnosi e trattamento (Italy)

SNC

Dr. Rosario La Rosa, an otorhinolaryngologist from Bologna, Italy, discusses Empty Nose Syndrome and the specialized center for the diagnosis and treatment of ENS at the Clinic Villaba in Bologna. Ear or septal cartilage is used as graft for reconstruction of the turbinates. Graft preparation and implant sites are guided by a three-dimensional CT images using a software based system. 

Read article: click here

Source: GVM Care & Research (Italia)

2017-08-30T17:22:22+00:00

Testimony of an ENS Patient aka “Scream for Help”

“I got emptENS bleedingy nose syndrome in 2011 and I truly died on that operating table. Empty Nose Syndrome is the worst condition to live with on this planet. You get ENS when a sinus surgeon cuts too much turbinate tissue out of your sinuses. The turbinate tissue sends signals to the brain and heart informing the body how much oxygen the body is getting. When your turbinates are damaged or too much is taken out, you truly will want to die. It feels like suffocating or drowning 24/7. Your whole body will go into a nervous system meltdown. It feels like my entire body is melting. My heart is throbbing because I can never catch my breath. When I got it, I didnt sleep for the first 2 months, I sat there shaking in bed, my head spinning, I just keep begging for a quick death.

[…] Many, especially me, wish I had cancer and/or AIDS, at the very least there is a chance of a cure with those conditions. With ENS, there is no sympathy, no cure, and worst of all, no understanding. No one truly knows the horror of this condition. […]

I hope by writing this, I can convince everyone to stay away from turbinate reduction surgeries. My doctor told me that it would help me breath through my nose better, instead I have one foot in my grave. ENT Doctors are covering up this condition. I went to 3 doctors, all 3 said I look like I have ENS, but not one of them will put it into my medical file. So when I die, no one will know it was the ENS. I beg you all to spread the word about this condition. […] These doctors are just getting away with the torture of so many lives. ENT doctors keep saying this condition is a thing of the past, something that only happened 50 years ago. […] In the year 2011, me being only 22 years old, walked into the operating room and was murdered. […]  All I needed was my septum repaired, instead I got death sentence (cancel that, torturing sentence). If I choose to live, I will be tortured. […] this condition often gets worse as time goes on too.

Please dont make the same mistake I did. I cant even really blame myself. […] all I needed was my septum repaired, not this. WHY ME? […] WHY in this time and age of technology is this still happening? My mother died of severe emphysema from smoking, and now I have to die from a disease that is a million times worse. Please, save the lives of others. I will continue to spread the word till my death. Peace be with you all.”

/ Anonymous ENS sufferer

2017-08-30T17:22:22+00:00

Explanation of Empty Nose Syndrome on Bionity

ENS Disability

An article gives a brief, but comprehensive ENS overview, including:

* Explanation of ENS

* ENS Symptoms

* “Paradoxical obstruction”

* ENS and Atrophic Rhinitis

* Current ENS treatment options

* and other information regarding ENS

Read article: click here (Source: Bionity)

Some quotes of ENT specialists:

“… The excess removal of turbinate tissue might lead to empty-nose syndrome. Excess resection can lead to crusting, bleeding, breathing difficulty (often the paradoxical sensation of obstruction), recurrent infections, nasal odor, pain, and often clinical depression. In one study, the mean onset of symptoms occurred more than 8 years following the turbinectomies.”

““Removal of an entire inferior turbinate for benign disease is strongly discouraged because removal of an inferior turbinate can produce nasal atrophy and a miserable person. Such people unfortunately are still seen in the author’s offices; these people are nasal cripples.”

“Unfortunately, a wide nasal cavity syndrome due to reduction or resection of the inferior turbinate (and/or middle turbinate) is still frequently seen. In our opinion, it is a “nasal crime.”

2017-08-30T17:22:22+00:00

‘Kill the doctors’

An article about ENS on the chinese Global Times.

 

Removing bones in the nose can lead to nightmarish complications. 
The Internet has lit up with conversations about an obscure complication from nose surgery this month, after an article titled “Empty Nose Syndrome – the real murderer of the doctor-stabbing case?” started circulating.

The tragic case happened last month in the No.1 People’s Hospital of Wenling, Zhejiang Province, where Wang Yunjie, the chief physician of the ear-nose-throat department, was stabbed to death by Lian Enqing, a patient who had been dissatisfied by surgery performed at the hospital, the Global Times reported on November 1.

Lian was reportedly suffering from nasal obstruction, headaches and insomnia after nose surgery, but several examinations showed nothing wrong. Lian’s family suspected him of having psychological problems and forced him to accept mental treatment.

The article said Lian killed the doctor because Lian suffered from Empty Nose Syndrome (ENS), a side effect of nasal surgery.

Some typical online commentary, in a QQ group named ENS, came from a patient who only gave his surname as Zhang. “Now I have become used to the pain. But it was terrifying for the first few years, because nobody understood,” he said.

Zhang told Metropolitan that he has had ENS for more than nine years, and it has made him depressed. During the group chat, Zhang and a few other patients mentioned phrases such as “a life worse than death,” “commit suicide” and “kill the doctors” a few times.

There are dozens of groups like this, and many of the groups have over 100 participants.

Read more here.

2017-08-30T17:22:25+00:00

Hope for Dylan

Click here to help Dylan fight against Empty Nose Syndrome !

Hi my name is Penny,

My son Dylan has had medical issues since he was a young boy, and as a result has had multiple surgeries and almost passed away in 2009. 

He was just finally starting to get back on his feet after years of being ill when he had to have yet another sinus surgery in 2013.  He had the misfortune of having his Nasal Turbinate’s removed during this last surgery. The result of which is a condition known as Empty Nose Syndrome (ENS). ENS is a highly debilitating and disabling condition caused by overly aggressive surgical damage of the vital nasal structures. (…)

2016-04-26T09:37:25+00:00

A new article on Buzzfeed about Empty Nose Syndrome

An in-depth article about Empty Nose Syndrome, based on the tragic story of Brett Helling, one of most recent ENS’ victims, and featuring some of the most important ENS experts, just appeared on Buzzfeed.

“Is Empty Nose Syndrome real and if not why are people killing themselves over it?”

2016-04-19T09:46:00+00:00