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.
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.
“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.
“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.”