My nightmare condition makes me feel like I’m constantly suffocating

Take a deep, satisfying breath.

Barbara Schmidt can’t.

With every breath, she feels as if she is suffocating.

About 20 years ago, Schmidt had nasal surgery for a stuffy nose and sinus infections and ended up with Empty Nose Syndrome — a rare debilitating condition that also may have plagued Michael Jackson.

“I had taken for granted that my body automatically breathes and senses that it is breathing,” said Schmidt, a married mom of one from Monmouth County, NJ.

Now, Schmidt says, she constantly has to remind herself to take breaths — and when she does draw in air, it feels as if she’s “breathing through a straw.’’

Empty Nose Syndrome, or ENS, was first medically identified in 1994 by Dr. Eugene Kern, who noted that two of his patients suffering from the condition were so tortured by it, they committed suicide.

ENS can result from any surgery — including a nose job — that affects the turbinates, or the cylindrical organs, stacked within the nasal cavity, three per side.

Turbinates warm and humidify incoming air, as well as help signal to the body that it is breathing.

In some cases, when turbinates are removed or affected during surgery, the patient’s lungs receive incoming air but cannot feel the sensation.

“The problem is a lack of communication between breathing and the brain,” said Dr. Subinoy Das, a rhinologist in Columbus, Ohio.

For Schmidt, this means she must constantly be aware of when she is breathing. Her breaths are shallow and jagged rather than smooth and steady. And she jolts awake at night, gasping for air.

One of Jackson’s physicians, Dr. Alimorad Farshchian, said in a 2012 deposition after the superstar singer’s death that his patient may have suffered from ENS, which might have contributed to his insomnia.

Jackson ended up dying from an overdose of propofol and other drugs that he took to help him sleep.

A study involving ENS sufferers earlier this year noted that the condition had “a profound impact on all aspects of life.”

In some cases, “their life is completely ruined,” one of the study’s authors, Dr. Jayakar Nayak said. “Some feel like a cage is wrapped around their chest.”

Nayak, of Palo Alto, Calif., is among a handful of surgeons in North America who are now using implants or special injections to bulk up ENS patients’ turbinates.

“We are putting a ‘speed bump’ in the nose,” he said.

Some doctors theorize that ENS patients have an unidentified predisposition to the condition, possibly involving scarring or wound-healing.

Currently, there is no way to determine who is at risk.

Breathing through the mouth does not help.

In the spring, Schmidt visited Dr. Das for a procedure to try to help ease her symptoms.

She said her condition has improved — somewhat. For example, “I can have a conversation without gasping every few words,” Schmidt said.

But ENS patients aren’t always taken as seriously.

Sufferers say many doctors are dismissive and even scornful when they describe their symptoms.

“It is hard for those around me to understand how a nose injury could cause all this,” said James Skinner of Canada, who has ENS.

Skinner, a former nose-surgery patient now runs, a database of references for ENS sufferers such as himself.

Skinner, a former computer programmer, said he feels so unwell that he can no longer work. But doctors accuse him of “exaggerating how bad it is,” he said.
Some patients detail the devastation of ENS in wrenching YouTube videos.

“The life has been sucked out of me,” one woman said.

Given a choice between losing her turbinates and losing her legs, she said: “I would choose my legs.”

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