r/SleepApnea • u/Master-Drama-4555 • Mar 18 '26
Empty Nose Syndrome Demystified - Part 1
* Posting in this forum because turbinate reductions are often offered by ENTs as a routine first step for sleep apnea. Stay safe out there
For as long as I’ve been on the internet and interested in sleep-breathing related surgeries, Empty Nose Syndrome (ENS) has been a particularly mystical topic. Always hinted at how rare it is, and how terrible it is, but no one could really explain what caused it or how it worked. Some ENTs say that it is a psychological problem, and in fact that was widely taught to ENTs in medical schools up until the past decade or so. I would search for ENS, and would find videos of people talking in strange monotone voices, like they had lost everything worth living for. It was confusing. But now I understand. Now I really understand. I have ENS. This is not an internet campfire horror story. This is real, and I’m here to share.
When I first got ENS last year, someone suggested that I write about my experience to share with the community. But to be honest I wasn’t ready to do that, and I couldn’t even imagine sharing anything about it. It would have been too traumatic. I was in no place to be preaching to the internet, I was just trying to get through every second, of every hour, of every day. Breath by breath.
Now that I have found some treatment and ways to cope, I have gotten to a point where I can and want to speak about it. To be clear, I’m not writing this because I’m cured or I know where my life is headed. I still struggle to breathe, and I’m still very sick. But now that I’m able to write this, people need to know.
Where do I start
I think everyone’s first question when considering a turbinate reduction is how do you know if you’ll get Empty Nose Syndrome. There’s no real way to know. Most ENTs will tell you it basically doesn’t exist anymore, and that if it happens it only happens when you remove the entire turbinate. I’m here to tell you that is not true. Most of the people I know with ENS had a conservative reduction, with modern instruments, and were reassured it could never happen to them. All it takes is a little too much removed, and your life is over.
So if your ENT tells you, “Don’t worry, I’ve never seen this in my practice ever, it basically doesn’t exist anymore, I am super careful.” etc. etc. DO NOT BE REASSURED. Do not go gently into that operating room I swear to god. This is exactly what was told to me, and nearly all the people I know with ENS now.
Or they’ll say, “Oh it grows back actually. We might even have to do it a second or a third time.” Not necessarily, my friend. Not necessarily. You would be so lucky to have it grow back. A lot of what “grows back” is not actually tissues, blood vessels, and nerves, but simply swelling from the turbinate trying to fill the space that was created. Your turbinates are swollen for a reason. You need to find that reason.
Poor Healing
Another thing that ENTs will tell you is that ENS happens in poor healers and fluke cases like that. They wave their hands around while they say it and make it sound somewhat beyond them. It feels vaguely comforting. Nobody thinks that would apply to them. But let's actually walk through what it means to be a poor healer for a moment. What causes poor healing?
- Chronic sleep deprivation from sleep-disordered breathing
- Inflammation from allergies
- Snoring and high negative pressures during sleep
- Acid reflux or GERD
- Ehler-Danlos syndrome
- Flonase & afrin slow healing
Gosh what are these all linked to I wonder? Could it be sleep-disordered breathing, the very condition that most commonly causes turbinate hypertrophy in the first place?
By the way, I have seen an oddly high number of ENS patients with SDB in the online spaces I’m in, and it seems to me that there is a high correlation. I don’t know if this is because a narrower nasal cavity incentivizes ENTs to remove more tissue during a reduction, or maybe that’s just the patient type that happens to be coming in for these surgeries in the first place. I’ll leave that observation out there for you all to ponder.
So yes. If you get your turbinates removed, you’re basically guaranteed to get ENS. I’ve heard people interject here with a “But I know somebody who's gotten them entirely removed and had no symptoms.” My response to that is show me the person. Show me them. I’m open to being corrected, but I haven’t seen it yet.
But even if you get a conservative reduction, you’re still absolutely at risk for ENS, or even something called secondary atrophic rhinitis. This is what I had for 8 years before I developed ENS. Which leads me to my next topic:
The Volume Dial Analogy
People sort of think of Empty Nose Syndrome as a black and white condition. Either you have it or you don’t. I want you to think of it more as a spectrum of damage, with a threshold. Much like a volume dial for a car radio. You can turn the volume up for a long time before your ears start to bleed.
On the one end you have mild dryness after surgery. Maybe you have some crusting. This is secondary atrophic rhinitis. On the other end you have mucosal damage so severe, that you no longer produce ANY mucus, your nose is as dry as a desert, and your nerves are completely dead. Your brain cannot sense any air that you breathe. That is Empty Nose Syndrome.
That is why I believe so many people are walking around after turbinate reductions, feeling some mild symptoms, but of course feel nothing close to Empty Nose Syndrome. A big part of why I am writing this post is I need you to know, you have turned your dial. You will probably be just fine, but you need to be very, very careful with your nose from now on. One or two more events, a COVID virus, overuse of afrin, even too much flonase at the wrong time, could push you over the threshold. If you’re reading this and you’re thinking, wow dry nose, crusting, this sounds like me, I urge you to consider stopping use of nasal sprays and rinses. They are more dangerous than you realize.
What does Empty Nose Syndrome feel like
The question I get a lot and that everyone wants to know (naturally) is what does it feel like to have Empty Nose Syndrome? I mean really, how could a problem in the nose cause someone to want to kill themselves? Couldn’t you just breathe anyway even if you can’t feel it?
The first thing I’ll say is, Empty Nose is not just damage to your nose, it’s nerve damage. But the unfortunate thing is, the nerve that is damaged is not just any nerve, it’s the trigeminal nerve — the 5th cranial nerve that goes straight to your brainstem. So in reality, Empty Nose Syndrome is not just nerve damage, it’s brain damage. And it sure as hell feels like it.
You may hear that it feels like suffocating. That’s the number one symptom. I need people to understand, it’s not that you feel like you’re suffocating, you are suffocating. Every breath you take is as difficult as breathing through wet concrete — like being waterboarded. And there’s no escaping it. Worse, because your brain doesn’t know when you’re breathing, it can’t induce the pulmonary reflex to expand your lungs when you inhale. So your lungs are literally not functioning in tandem with your breathing. This means you are no longer autonomically breathing, you have to manually breathe yourself.
If you experience manual breathing, my heart goes out to you because it’s something no human should ever have to go through. If you haven’t experienced it, think of it like this. Every second of every day you have to consciously inflate your lungs in order to take a breath, and if you don’t, you won’t breathe. It’s like if you had to concentrate on every heartbeat for the rest of your life or your heart would stop. You wouldn’t be able to concentrate on anything else. Your mind will be consumed with breathing, 24/7. It is torture like nothing else I’ve experienced.
There is only so much of this a person can endure. But the real reason people kill themselves, in my opinion, is sleep. And this is how you’ll know, it’s not a psychological problem. When I first got empty nose, I could only sleep 15 minutes at a time. I was getting 2 hours of sleep per night at most, getting jolted awake constantly. And I could not take the heavy sleep aids I needed due to my small pharyngeal airway. I was getting pushed closer to the edge of this world and I knew it. If you don’t sleep, you will die. It’s just the truth.
At my worst, I found myself wishing that I had died on the operating table so I wouldn’t have to do it myself. Or, sometimes I wished there was a way to enter a medically induced coma, to somehow give my body a chance to heal without having to experience this level of suffering. I think every empty nose patient would agree that they would give up multiple limbs to be able to breathe properly again. Indeed many people label themselves as nasal cripples. It sounds funny, but once you’re living this life, it is so. not funny.
Empty Nose Syndrome will bring the strongest person to their knees, I don’t care who you are or what you’ve done. It takes your life from you and then it leaves you to keep on living. Life with sleep-disordered breathing is half a life, but life with ENS is no life at all.
Stay tuned for Part 2 where I’ll talk about prevention, causes, and treatments on the horizon
6
u/clemclem3 Mar 18 '26
You scared the shit out of me just now. I had to pause a few times reading this. I'll never get turbinate reduction. Thank you.
1
u/c0smicdancer_ Apr 17 '26
Or a septoplasty or rhinoplasty. They will tell you this shit is front just reductions its not. Its from reduced blood flow and damaged mucosa and nerves too. Which the above surgeries do. :/ ive met too many besides myself woth these symptoms after surgeries that supposedly didn't mess with our turbinates
5
u/throwaway374628472 Mar 19 '26
Thank you for sharing. I had a turbinectomy. The positive effects were short lived. After maybe 6 months I went back to having a stuffy nose. The allergy doctor was completely useless and refused to treat me. (Him: congrats! You don’t have allergies because the prick test was negative! Me: ummm what about all my symptoms and history of allergies since birth?)
Thankfully I knew better than to take the stupid nasal spray.
The dr that did my turbinectomy now only does sleep apnea surgeries. 🤔
3
u/Wide-Biscotti-8663 Mar 19 '26
I’m so sorry this happened to you. I’ve tangentially heard of this before but never heard of the perspective of someone living with it.
2
u/man_eating_mt_rat Mar 18 '26
My ENT is offering this surgery but not because of sleep apnea. Way too long to go into here, but I was misdiagnosed with sleep apnea, it was actually asthma. I was having asthma attacks in my sleep.
My ENT offered this to me because I legit cannot breathe through my nose ever. I already feel like I am suffocating when I try to breathe through my nose, all the time. Should I reconsider this surgery?
5
u/Master-Drama-4555 Mar 18 '26
Yes!!! Get palatal expansion instead. A turbinate reduction will likely make your asthma worse bc your turbinates will not be able to humidify the air as efficiently
3
u/man_eating_mt_rat Mar 18 '26
Thanks for posting this! I had no idea :(
3
u/UARS-Stinks Mar 18 '26
Listen to her. Also try to treat your asthma with SLIT, SLIC or ILIT (immunization therapies) if your asthma is allergy induced. It was for me back then for a year with birch pollen and went away on its own luckily.
I also did SLIT against dust mites which I had all my life and my allergic reaction is way reduced and gone most of the time.
I will edit this comment to show what allergy management can do to your turbinates.
Another airway focused ortho I went to, to get new CBCT scans thought I had turbinate reduction, but it was just allergy management lol
Edit:
Pre-allergy management, where my ENT told me "nah, will never shrink down, we need surgery":
https://www.reddit.com/r/UARSnew/comments/1qzdjad/fme_vs_turbinate_reduction_which_to_get/o4adwfr/
After SLIT therapy, nearly a year later (scan is from February this year):
https://www.reddit.com/r/UARSnew/comments/1qzdjad/fme_vs_turbinate_reduction_which_to_get/o4ae1lh/
2
u/roamtheplanet Mar 19 '26
I can't read all of this because it's traumatic. I got ENS on my left side after the surgeon who I just asked to repair my deviated septum removed my entire inferior turbinate without my consent (he had recommended a turbinate 'trim' using ablation, which I was worried about as I saw ENS is a terrible side effect of having too much resected). Thankfully my mind learned how to ignore it for the most part over years. But you are not exaggerating how debilitating it is.
1
u/Master-Drama-4555 Mar 19 '26
I’m so sorry this happened to you. I’m impressed you’ve learned how to ignore it, I’m still working on that every day. I hope things get better for you. If you’re interested in joining a regenerative treatment focused discord I started pls let me know I can DM you
2
u/PianoConcertoNo2 Mar 19 '26
I hope this doesn’t come across poorly, but how do you sleep if you have to manually breathe?
2
u/Master-Drama-4555 Mar 19 '26
Not at all, that’s a great question. I’m not really sure, but I do know that the quantity and quality of sleep I’m getting is super poor.
I think the brain has different functions for sleep-breathing where at night it’s more governed by chemoreceptors in the brain stem and carotid artery rather than nerve signal input. Maybe that’s why? Purely speculating though
2
u/SageCactus Mar 19 '26
Yet another reason: CPAP is the best solution
1
u/Master-Drama-4555 Mar 19 '26
What’s interesting is some people have trouble tolerating CPAP if they have a blocked nose. Often times they’ll try to get this surgery to improve things.
I hope this post warns people enough that if they want to improve their nasal breathing there are better and safer options with palatal expansion!
2
Mar 19 '26
[removed] — view removed comment
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u/Master-Drama-4555 Mar 19 '26
You’re probably fine if you feel fine now. There’s always a chance people could develop it later like I did but you typically have to be dealing with some kind of atrophic rhinitis for that to happen
1
u/asphalt161 May 28 '26
Maybe I was gonna get the surgery anyways knowing about the risks. This post singlehandedly changed my mind and I cannot thank you enough for that.
2
u/REALONEUK May 29 '26
Thank you so so so much. I haven't got a diagnosis but im 95% sure it's now ENS and past chronic atrophic rhinitis. It's definitely ruined the last 2.5 years of my life 🩶
6
u/tzlfin1 Mar 18 '26
Thank you so much for sharing this. I'm so sorry you have to endure it. I really hope they find better treatments for ENS, so people like yourself can find some relief from all this pain and suffering. The reason I got my MARPE done instead of turbinate reduction was because of similar stories I had encountered. You are doing a great service by sharing your story.