Empty-nose syndrome sufferers feel invisible

Like trying to come up for air

Robert Gerlach
  • Robert Gerlach

If you’ve ever had a bad toothache in your upper jaw, you know the general area where the human animal experiences life in its greatest intensity. You can’t get away from the pain because it’s right where you live. Similarly, sufferers of a medical condition called empty-nose syndrome, say they found out the hard way that the area inside of your nose and above the roof of your mouth can provide a baseline sense of well-being — or a complete lack thereof.

“It’s pure, unremitting hell,” says Robert Gerlach, 34, of Lemon Grove, who was diagnosed with empty-nose syndrome following a nasal surgery in 2011. Gerlach, who relocated to the San Diego area from Rochester, New York, two years ago, is like many others who move to the region hoping this is where they will find relief from the rare, but increasingly recognized condition.

It turns out, a common procedure called a turbinectomy or turbinate-reduction surgery in rare cases can cause empty-nose syndrome. Turbinate reductions are frequently performed to treat sleep apnea. That was the reason for Gerlach’s operation.

Just above the roof of your mouth and behind the exterior of your nose are a set of three tiers of flesh-covered bones. Each of those tiers is decked out with a pair of structures called nasal turbinates. These are bony, knoblike features inside the “nasal vault.” They are covered with soft tissue made up of epithelium and mucosa that exchange and humidify air, while also warming air to ready it for maximum oxygenation and distribution by the lungs.

The system of turbinates is a stroke of evolutionary genius, which the American Rhinologic Society says has been key to mammals’ and birds’ ability to adapt to hostile climates. The epithelium, which look like microscopic hairs on the turbinates, allow you to smell and to efficiently breathe through your nose.

Ear, nose, and throat specialists often surgically reduce the size of nasal turbinates on people with chronic breathing problems. Although most turbinate reductions are successful, empty-nose is a rare post-surgery syndrome that leaves its victims feeling permanently “hollowed out” or “zombie-like,” as more than one sufferer described their symptoms to the San Diego Reader.

“This is worse than death,” says Gerlach, who has undergone nearly a dozen subsequent procedures in search of relief following the turbinate operation he says gave him empty-nose syndrome.

Gerlach’s first surgery did nothing to alleviate his obstructive sleep apnea. He says his sleep troubles are worse than ever. Sleep clinics across San Diego, where he frequently undergoes studies, have become his homes away from home.

The upper respiratory system

The upper respiratory system

Put in lay terms, obstructive sleep apnea happens when tissue blocks the respiratory system, encumbering normal sleep. Nasal turbinates are often blamed for such obstructions; so it’s only natural that doctors have, for years, been surgically reducing turbinate tissue.

Most researchers cite a 1993 study published in the New England Journal of Medicine that found 24 percent of men and 9 percent of women in America suffer from obstructive sleep apnea. It’s a condition that can lead to depression, stroke, heart disease — even death. However, there’s little agreement about the success rate of turbinate reduction as a treatment for sleep apnea. Figures range from a 30–90 percent success rate, varying by technique.

Another local empty-nose patient says the fact that he was told he needed nasal surgery to help him breathe better couldn’t have come from further out of left field than it did.

Before and after turbinate reduction

Before and after turbinate reduction

“I didn’t even have a problem breathing or sleeping or anything — not even a deviated septum,” says Nathan Schmidt, 36. He underwent “an overly aggressive” turbinate reduction in 2004 in Boston. “I was young, in a band and thought I’d listen to my friends’ and family’s warnings that loud music was bad for my hearing,” Schmidt says, recalling his decision to get checked out by an ear, nose, and throat specialist as a precautionary measure to protect his hearing.

Nathan Schmidt

Nathan Schmidt

“I thought I was being proactive,” he says, adding that he now wishes that instead of an ear, nose, and throat doctor he would have seen an audiologist, who would have just tested his hearing.

“Instead, he looked in my nose and said I’d breathe a lot better if I had turbinate-reduction surgery. I told him I didn’t think I had any trouble breathing, to which he replied, ‘You don’t know what normal breathing is because you don’t have any other point of reference.’”

His insurance paid for the turbinectomy to the tune of about $12,000. Starting with losing the ability to play in a band, Schmidt’s life would never be the same. He now lives in Tijuana, where he owns a small business.

He receives care for empty-nose syndrome in San Diego from Deborah Watson, M.D. Watson is an otolaryngology (ear, nose, and throat) surgeon and professor of surgery at UCSD. She is considered one of the nation’s foremost experts on empty-nose syndrome. He praises Watson for diagnosing his post-surgery travails as empty-nose syndrome and for helping him find modest relief.

How many people suffer from empty-nose syndrome? No one knows because there’s never been an effort to find out.

“It’s not in their interest to bring this up,” says Gerlach, referring to the otolaryngology profession. “Turbinate reductions are the most common surgery they do; they don’t even tell you it can cause empty-nose.”

Compared to Gerlach’s, Schmidt’s condition is mild. In fact, Schmidt says his is among the mildest he’s heard of among a growing community of sufferers who seek solutions, advice, and share news of potential new treatments with one another via social media. Yet, even for Schmidt, having empty-nose is a rough way to live.

“It’s tough, but some days are better than others,” Schmidt says. “I’m a naturally outgoing, well-adjusted person. I went to Juilliard and had a very active social life before empty-nose syndrome. But when my nose is bad, which is well over half the time, I feel miserable, tired, and anxious, and don’t want to go out. It’s difficult making plans; like if I’m invited to something, I’ll instantly think, If my nose is bad that day, I’ll not want to go, and if I do go and look miserable people will think it’s because I don’t like them. Having said that, I try to see it as just a disability and keep in mind all the other aspects of myself, like my intellect and health otherwise, that it doesn’t affect.”

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Comments

Very informative article; I was planning on checking out surgery for my sleep apnea. I have been using a CPAP machine for almost five years and it took almost 2 full years to keep it on all night.

I cannot understand why ENTs don't comprehend this condition. I have had ENS for 6 years. My turbinats were reduced when I made a comment to a doctor that I snored. To "fix that" he cut out a portion of my inferior turbinates, mucosa and all. I had no idea what turbinates were at the time. I could have just used Breath Right strips for God sake as I had a perfectly healthy nose with no breathing problems whatsoever! It took a while after the surgery for my Turbs to atrophy into Empty Nose Syndrome which I think is why they think this condition is "rare". I know some people who didn't get the severe ENS symptoms til 8 years after their surgery. I think it depends of how fast your remaining healthy tissue deteriorates and atrophy's. The hardest part of this for me and many others is not being able to get proper or any sleep. Because of the nerve damage we don't feel the air so our brains wake us up all night thinking we need air. Like this article says, Its not that we don't think we are breathing, we have just lost the facial sensation of breathing. So when we are awake, we intellectually and consciously know we are breathing but when we doze off our brain is not feeling the sensation and signals us to wake up. The sleep deprivation is acute and fatiguing. Then there is the suffocation feeling (thank God this only comes and goes for me for now) It feels like you cant ever get a deep satisfying breath. I've heard it described that it's like when you put your thumb on a water hose the water sprays much further. Take your thumb off, and the water drops to the ground. We've lost that "thumb", and without that pressure, the air looses its momentum pushing it into our lungs. That made a lot of sense to the way it feels. ( I swear a car mechanic could understand this better than these ENTs!) Then there is Gerd because you are swallowing air wrong (I believe) and constant maintenance of dry eyes, dry mouth, dry nose, sore throat and just having to be conscious of breathing instead of it being a natural thing you don't notice. All smells and tastes have been diminished or altered which takes away a lot of quality of life. I have zaps of nerve pain because the Trigeminal nerve was affected which I've heard of others having as well. I could go on, but you get the idea. People need to know the risks and doctors need to stop selling this surgery!!!

I am one of the patients, Robert, mentioned in the profile. Anyone interested in learning more about my situation or lending a hand, connections, anything, can do so here:

https://www.gofundme.com/whnsbk

Thank you!!

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