Medical Mystery: Empty Nose Syndrome

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CHARLOTTESVILLE, Va. (NEWSPLEX) -- Every year, thousands of patients undergo surgery to fix all kinds of nose problems.

Most of the time, everything goes great. But sometimes, patients develop something called Empty Nose Syndrome, or ENS.

In 2003, Erika Schneider had everything going for her. She had a loving family, a husband and was just a few semesters away from finishing grad school.

Then she went under the knife to fix what her doctor said was a deviated septum.

Thirteen years later, Schneider has lost everything, because she is one of the rare group of patients who has developed ENS.

It's is a disorder that makes patients feel like they are suffocating.

"I felt like I was over breathing. Just that there was too much air going in," Schneider said seated are her kitchen table. "But at the same time I was drowning. It's really hard to describe."

She lives in a small, humid apartment near downtown Charlottesville, and she keeps it humid because it helps her breathe.

She's easy to recognize, with a Breathe Easy strip across her nose that she wears all the time.

"Pretty much, 24/7 you think you're suffocating," Schneider continued.

She says living with ENS is a constant battle to overcome the feeling that you cannot breathe.

"You try to distract yourself from that the best that you can. You try to treat it with all of this stuff," Schneider added, motioning towards the arsenal of home remedies in front of her.

From rinses to creams, humidifiers to baking soda, Schneider has tried it all to regain the feeling that she can breathe. She has had some success.

But some of her friends suffering from ENS have not been so lucky.

"I have had friends who've killed themselves from this," Schneider said about the people who cannot overcome their ENS symptoms.

Unfortunately, the medical community cannot agree if ENS exists.

"The true diagnosis is difficult because there isn't actually a consensus on what the disease actually is," said Dr. Spencer Payne, sitting in his doctor's office at the University of Virginia Fontaine Research Park.

Payne is one of just a handful of doctors working with ENS patients.

He says people like Schneider exists in a medical paradox: they say they cannot breathe, but everything looks healthy.

Payne says, as a result, most doctors tell ENS patients that the disorder is in their heads.

"The doctor would say 'oh, it's because you're single. You're just stressed out that your not married yet,'" Schneider echoed, saying Payne is right, and most doctors believe she is suffering from some sort of psychosis.

But Payne disagrees. He thinks there is a very real cause for ENS, and it deals with the type of surgery many ENS patients received before developing symptoms.

"The common thread for people who've had surgery is that they've had really aggressive surgery," Payne said about the research he has done on ENS.

He believes some aggressive nose surgeries create nerve damage inside the nose of the patients, which in turn interferes with their breathing.

According to Payne, the nose has tubular structures called turbinates. Turbinates help heat and cool air passing through the nose, and he says that heating and cooling sensation is one way the body can tell it is breathing.

But in some patients, when those turbinates are altered, the body can no longer feel the heating and cooling inside the nose, either because too much of the turbinate was removed or because the surgery caused nerve damage.

As a result, Payne believes patients like Schneider are truly suffering.

"ENS absolutely exists," Payne said about the disorder. "It's just not necessarily certain what that means for every specific patient."

As for Schneider, while ENS has changed her life, she says she will continue to push forward.

"It's just bad luck that it happened to me," Schneider explained about her own surgery.

But she says while surgery is important, and in some cases necessary, more needs to be done to prevent other patients from developing ENS.

"I just want to find a way to prevent it in other people and help find a cure," Schneider concluded.

Despite its severity, Payne says that ENS is incredible rare. He says maybe one in 1,000 patients will develop the disorder.

Schneider and Payne both agreed that patients worried about ENS should talk to their doctors.

For more information on ENS, click on the links alongside this story.

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