Never heard of it? Neither had I. Sounded more like a Sherlock Holmes story than a “condition” somebody could have. But there it was, written by the patient himself in the Reason For Visit section of our intake form. Before he actually walked into the examining room, I made a quick obeisance before my PC, fingers flying across the keys, summoning the all-powerful Wiki gods for some quick education on empty nose syndrome.
“Aha!” I muttered to myself. “So someone finally gave a name to that piece of surgical butchery.” I’d seen a couple of patients with it in the distant past, before it got its new moniker, and knew there wasn’t much to offer anyone with an empty nose except empathy.
The main symptom of empty nose syndrome is a paradoxical one. Despite its name, you have the constant sense that your nose is stuffed up and you can’t breathe. One click beyond Wiki provided some genuinely depressing news: there even exists an empty nose syndrome association that provides updates on the progress of various treatments.
When I was first in training as a fledgling internist, one of my professors, crusty and cheerful as a barnacle, cautioned us never to be in thrall of surgery. If we were doing our jobs right, we kept people out of hospitals and especially out of operating rooms except when strictly needed.
“There’s far too much unnecessary surgery out there,” he snarled (crustily). “And surgeons are rewarded with more money than is good for ‘em, all to do more surgery, not less.” And then, with withering contempt, he added, “The surgeon’s brain is incapable of patience. Surgeons maintain their own myth that ‘surgery cures’ and actually believe a scalpel can fix anything.”
Iatrogenic: illness caused by treatment
In medicine’s perpetually obscure vocabulary, we use the term “iatrogenic” for any illness caused by medical or surgical treatment. A physician’s voice drops an entire octave when he’s forced to say the word aloud, especially if it happens to be over a corpse. Empty nose syndrome is the ne plus ultra of iatrogenic debacles, though there are thousands of other iatrogenic disasters. On the brighter side, at least you don’t die from it.
Empty nose syndrome is the result of an overenthusiastic surgeon removing one or more bones in your nose called the turbinates. These are a pretty complex network of bones and blood vessels whose purpose is to warm, moisten, and filter the air you inhale. You become aware of your turbinates when you’ve got a cold. Their moist surfaces swell and as a result you get a stuffy nose. As delicate as Irish Belleek, the turbinates break easily, an occupational hazard among professional boxers, hockey players, and yours truly, taking an over-the-handlebar header on my bicycle. I needed minor turbinate surgery (and new teeth), but other than extreme cases all in all it’s probably best to leave your turbinates alone.
People with empty nose syndrome began appearing as a consequence of some articles in the medical literature that contained the same absence of logic involved in doing prefrontal lobotomies for mental illness. Overly aggressive ear-nose-and-throat (ENT) surgeons, struggling with the twin burdens of BMW payments and children at Yale, hit a gold mine when someone linked the then-mysterious chronic fatigue syndrome to obstructive sleep apnea, in which a blocked, weak, or narrowed airway causes periods of non-breathing during sleep.
The connection has since been disproven, but to this day if you complain to your doc about being tired frequently, sooner or later you’ll find yourself spending some serious money in a sleep lab.
Sleep apnea has been a gold mine for the ENT boys. The non-surgical treatment for sleep apnea, a CPAP (continuous positive airway pressure) machine wheezily forcing air down your throat, is, for many users, about as pleasant as one of the toys from the Spanish Inquisition. If a CPAP fails to resolve nighttime breathing problems, which is common, your second option is (you guessed it) surgery. Don’t let it surprise you that many successful ENT surgeons have financial interests in sleep labs and are more than willing to sell you a CPAP machine if they can’t get you on the operating table.
A nasal crime
For some years now, ENT surgeons have been performing a variety of procedures for sleep apnea and I will acknowledge they’ve gotten better at it. But the hundreds of people in the empty nose support group are in the before-we-got-good-at-this group, victims of what one surgical journal described as “a nasal crime.” Empty nose victims often also had surgery for chronic sinusitis and deviated nasal septum, two conditions where the indications for surgical intervention are marginal at best.
The most disturbing case of sleep apnea butchery I ever saw was some years ago and not in an empty nose syndrome patient. A young man I’ll call David, in his twenties with chronic fatigue syndrome, had read about the sleep apnea connection, knew he had large tonsils (a possible cause of obstructive sleep apnea), and made his own appointment with an eminent ENT physician who was head of the department at a major university hospital. David underwent the recommended sleep study and afterward met with the surgeon, who looked in his throat, glanced at the report, and scheduled him for surgery the next day.
When he awakened, David discovered that swallowing food had become problematic. The surgeon had not only removed his tonsils, but also his uvula and part of his soft palate. Your uvula is that little piece of hanging flesh at the back of your throat, and it’s attached to your soft palate. Now missing these parts, David found that if he didn’t swallow slowly and carefully, part of whatever was in his mouth went upward into the back of his nose. He’d been working with therapists to correct this. Of course, his chronic fatigue issues remained unchanged.
But the real jaw-dropping moment occurred when I was going over the stack of medical records David handed me. Buried in the files were the results of his original sleep study. At the bottom of the page was written, “Conclusion: No evidence of obstructive sleep apnea.”
Truly, we were both stunned. I said, “You know, I rarely recommend filing a malpractice suit, but this is criminal.” David said he’d think about it, but in speaking to him a couple years later he told me he’d never pursued it. “I was too ashamed. I’d been really…dumb, careless, I should have known better. I just wanted to leave it behind me.”
Since the Middle Ages, surgeons and barbers have been lumped into a single profession, the red stripes of the barber pole symbolic of blood-soaked rags. This has always struck me as unfair to barbers.
When an enthusiastic barber clips away too much hair, you can count on it to eventually grow back. With surgery, you’re stuck.
David Edelberg, MD