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 exists an empty nose syndrome support group with hundreds of members and updates on the progress of various nose-rebuilding procedures.
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
24 thoughts on “Empty Nose Syndrome”
You said your granddaughter just sits around all day but didn’t say anything about the symptoms she experiences that cause her to do this
We just found out ny Granddaughter has ENS.She is only 19.This hss been going on for a year and i dont know how many Dr.s &medications.Everyone had a different diagnosis. What to do now? Was hoping there was a lawsuit pending some where
She is miserable doesnt go out just sits around..Any info will be helpful..Thx Marge. Granddaughters name is Alexis
I am currently dealing with this issue – Empty nose syndrome.
It’s caused me so much havok.. and voice issues too and i am a trained singer & rapper.. performer.. And it’s made my abilities decline like crazy. For various reasons.
The sad thing is, this surgery was NOT necessary but was a small elective procedure to refine my tip a little. But NO! The doctor did not communicate all the was going to do, and seriously butchered me up.
He also performed it aggressively. And when i asked him about Turbinates he went back and forth on his answers. And got annoyed when i asked him questions. And did nothing to address the issues i was having, scar tissue wise or anything.
I really hope there’s a way to correct this & get some relief.
I just want my voice back.
The difficulty with ens seems to be an inabilty to catch one’s breath by a sniff so that the lips are compressed and by a sympathetic nervous system reflex the lung airways are widened. This can be confirmed by pressing on lips with a finger.
Nasal inhales should therefore be accompanied by lip compression.
This thinking is based on asiatic medicine such as marma-yoga and accupressure and western medicine is accordingly foxed by ens.
Malpractice attorneys are very reluctant to take cases unless there is very obvious negligence. The procedure you had was probably unnecessary but it will be hard to prove negligence.It’s especially hard you or he would need to find another ENT who would testify that negligence occurred. That could be very difficult, time consuming and expensive. If your attorney lost the case, he would be personally responsible for all the costs of your case
I found this article, great one by the way, as I’m doing research to prep for filing a law suit against my ENT. I was just diagnosed today with ENS by a 2nd and 3rd opinion. The doc today said he was very aggressive and took a lot of my middle turbinate and portions of the others. I initially went to him with a sinus infection. He said surgery was the only option. I asked many times about less evasive options and he blew me off. I asked as many questions as I could to which he assured me I’ll be good to go. He didn’t talk to me about the exact procedure or the different options for turbinate reduction or the side effects of same….isn’t that a doctors responsibility???? He’s continued to play dumb for the last three months while I’ve been on and off antibiotics for infections. I’m super pissed that he doesn’t at least have the decency to tell me that I have ENS. Can you or anyone else on this threat point me to legal precedent for this and/or where I can find the specifics regarding turbinate reduction procedures? The first lawyer I spoke to said I need to prove negligence and finding out the medical standards would be the first place; however, all the internet sites I’ve found won’t give non-doctors access to the information. Thank you!
Growing up I had breathing problems. Meds had on label may cause drowsiness. I used shots to build immune system, I was taught self hypnosis for healing, read many books on healing and I think self-esteem also helped. Found an herbalist that helped me to detox. In Feb 2012 was put on cpap. June 2012 sleep walked out of semi. Oct trying to use cpap again I had a seizure. On total disability now. (2016) Had over 2 million safe driving miles. Cpap has cost US billions in fraud. SSD 1,600. One med DR wanted to put me on was 600 per/month. I can share links to fraud.
22 yrs. of ENS; can’t believe I’ve made it. adjusted to flat emotional response, depression, anxiety, dry nose,loss aof ability to run; substituted w/ weights and Elliptical training; went thru 10 therapists; all diagnosed me w/OCD; didn’t believe my story; thinking of writing story for Outer Limits about my ENS trials.
Sorry but I have never come across anyone whom I’d consider capable of treating ENS
This was a fantastic and accurate article on Empty Nose Syndrome,(ENS), and the harm and discomfort it causes in one’s life. Well said Dr. Edelberg. I have ENS too from an initial deviated septum operation where my Doctor decided to take out my turbinates without asking me? He said they were too inflamed.
By chance, do you know of any Doctors that treat ENS? Any improvement would be welcomed! I have tried them all and nothing works.
I have years of sinus congestion and sinus infections. I also have chronic dry nose and have never had any sinus surgeries yet. It is truly miserable and I have tried every medication and several ENT Doctors. They suggest septoplasty and turbinectomy.my after I quit afrin. After reading this , I’m really scared. I was told radioblasty is safe but doesn’t sound like it either..just so frustrated! !
ENS is really hard condition. I am suffering for 2 yrs after RF. There is no hope for me, and I wish I have died on that day.
I’ve suffered from a form of ENS for over 30 years. It is very real and very crippling. In my case my nostrils feel way too with no turbulence (hence the word turbinates)and terrible, non-moistening airflow. They do not feel blocked. I dream of having a cold so I can get some blockage. I walk around with small pieces of cloth in my nostrils to get some turbulence and resistance. Impossible to put into words the open, gushing disorientating feeling. Relaxing and meditation is impossible with ENS.
I got empty nose syndrome from radiofrequency turbinate reduction (supposed to be the safest). Stay away from this dangerous surgery. Suffering with chronic infections or a stuffy nose is infinitely better than the side effects of getting your turbinates reduced. I pretty much received a lobotomy that day, I’m so depressed. I’m a college graduate, but now I can barely stay focused on a television show because of this debilitating syndrome.
It’s great that your article recognizes this condition and does a good job of explaining it, but no one ever mentions any treatments or therapies to help us. I have suffered with ENS for 10 years now and it gets progressively worse. Superficial suggestions and remedies don’t work. Physicians need to address this serious and painful condition in the same manner they address other conditions. I look forward to the day there is some actual help.
Sir ,this is a very interesting article,I don’t know why David didn’t sue this doctor who was a medical criminal. My doctor told me that he was going to do a simple Balloon Plasty procedure and when I awoke I had all but 5% of my turbinates removed .My nose is a wreck and this quack told me that I will be fine and he ws going to take care of me.He even laughed in my face when I brought up the possibility of having ENS.He then became irate at challenging him.I’m very large Army veteran so I knew at that point that he was covering something up and for him to yell at me like he did,he surely had something to hid.Well later,I received a second opinion and the ENT informed me that this was total recklessness and should not have happened……I couldn’t walk away from it like David…..I sued the doctor and it is currently in litigation.How in the hell do they sleep at night.
Sufro de ENS hace 5 años y medio , tengo 48 años….. hay dias que no tengo alientos para nada…. muy raras veces puedo decir que me siento bien…. quiero saber si alguien se a sentido mejor despues de implantes …… requiero ayuda siento que voy a morir…GRACIAS….
We have no feedback on the implant reconstructive surgery. Please check the many ENS forums for more information. Good luck.
Thank you for publishing this article about Empty Nose Syndrome, sometimes called Crippled Nose Syndrome. I am an unfortunate member of the support group of sufferer of this devastating & disabling condition. The important thing here is that all medical doctors swear to “FIRST, DO NO HARM”. The 2nd important point is that IT IS STILL GOING ON.
This is a clear example where self-governance & state surgical review boards are not doing their job of putting an end to dangerous surgeries or disciplining the MDs that insist on continuing to perform dangerous crippling and devastating surgeries.
We have the CDC to protect the population against outbreaks of infection. We have the FDA to protect society from drugs & food that are causing problems for a portion of the population. But we are not protected from Surgeons who insist on continuing to do procedures that lead to ENS.
Why don’t we hear about lawsuits? Patients are too sick to pursue them. Doctors will not testify against doctors. They rely too much on referrals from each other for future business.
This is what I have observed over the last 21 years. Thanks for reading.
I am a victim of this nasal crime, and have ENS now. I struggle with it daily. I tried to do research prior to my ENT suggesting a turbinate reduction, but I couldn’t find anything, so I trusted him. He’s the professional, right? He should be doing what is best for his patients, right? Turns out that is just not true. I just wish I would have known the importance of turbinates before having them cut out two years ago.
So scary, people should run when surgery is the first rather than the last option a surgeon suggests.
My husband had his appendix removed. On a followup visit his GP discovered he had a hernia (same area as appendix), and would need surgery. So less than a month after the first surgery there was a 2nd surgery and what was supposed to be a seamless short recovery became protracted and painful. We were always suspicious that the surgeon (same surgeon) caused the hernia, but couldn’t prove anything.
Uh-oh. I’m one of those patients who had everything removed in a tonsilechtomy when I was barely three years old. Tonsils, adenoids, uvula –everything came out. Everything grew back, and I now even have a tiny uvula,
Fortunately I never had trouble with. anything as a result, but my parents were furious at the surgeon for removing everything. My father used to say, “You think you feel bad now? Wait ’till you go to the doctor –then you’ll REALLY feel bad.”
Thoroughly amusing, except there was toooo much truth in the article’s words.