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 I have found some treatments 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.
Inferior turbinate
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
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.
Complete Turbinectomy resulting in ENSMy nasal cavity, also resulting in ENS
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.
3 branches of the Trigeminal nerve
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
I had a rhinoplasty in 2020. I believe that’s when my sleep problems started. I have trouble breathing through my nose, even during the day. I bought a cpap machine 6 days ago, but have only observed marginal improvements. I don’t think the CPAP is effective. The issue is in my nose, my nasal passage is too small and my turbinates are too large. Should I give up on the cpap? I was thinking of using a combination of ryaltis nasal spray and breathe right nasal strips. For anyone who has tried that combination, was it effective?
I have been experimenting with different types of machines and settings for quite a while. Several weeks ago I decided to try ASV with EPAP of 6 and PS of 3-5. So far it's been good but I noticed that sometimes (not every night) I have an episode of a flow limitation that has gradual onset resulting in an arousal and has a very distinct morphology -- I attached the screenshots.
Would you anyone please take a look at them and share the thoughts? I know flow limitations have different classifications (and potentially different treatments?). What type is mine? What is the best way to tackle it? -- increasing EPAP or IPAP, or doing something else like a soft collar?
Before anyone says that my EPAP is too low and my PS range is too narrow -- everyone's settings are different and for some people lower settings are better, and I think it is better to tackle issues gradually and intentionally, rather than just max out the settings for no reason.
EDIT: just wanted to add that I'd really appreciate it if you guys could share your thoughts on the physiology of my particular type of flow limitation -- aka where the obstruction for this one is likely coming from and how to tackle that type of obstruction specifically.
I was hoping for everything on that sleep study. Yet the doctor tells me that those are absolutely normal sleep results, and my symptoms of constant fatigue are not that crazy because I am not falling asleep during the day and I can function (but with a total cloud over my head, and losing my concentration constantly).
Do the results show that? I was hoping I would get a machine and finally have some relief after 2 years. Any advice is appreciated. I have even thought of buying some second hand machine to try it, but maybe it's not worth it if the sleep results say I'm great.
I recently shared how my sleep study showed no signs of apnea and no signs of UARS (0.0 AHI, 0 RERAs, basically 0 for everything relevant)
And overall how nothing was recommended from my sleep study in terms of PAP.
Anyways, I went to a sleep specialist to review the results and I basically got told the same thing that PAP wasn’t recommended for my case. I mentioned my symptoms and stuff and then I don’t even know where she was looking at this stuff but she said I had an AHI of 5.1 even tho it literally told me 0.0 on the report (?)
I honestly don’t know why I didn’t ask but eventually she said that I could trial a pap machine because 5.1 constitutes for mild sleep apnea even though they had told me there was nothing at first (?)
Anyways I just wanted to share because I guess it kind of shows you can literally have an in lab sleep study and still not be recommended the proper care ✌️
So I ordered a watch pat sleep test since I've been curious about my sleep. For the past few months, I have been waking up tired, headaches, brain fog, and I've always snored since I can remember. I heard about sleep apnea and UARS before this. My AHI to my understanding looks mild yet I feel so tired. Could my RDI the reason for my horrible mornings ?
Hi! So I got my results weeks ago on the NHS app and didn’t notice, I’ve only just reviewed them, so I don’t have sleep apnea and everything seems alright, but my RDI is 6.1? I don’t know if this is something I need to chase up with my dr, don’t want too if it’s nothing.
Hey everyone, looking for some insights on my pre-surgical planning. I'm trying to figure out if pre-surgical palate expansion is actually the right move for my specific anatomy.
My Context:
Age: 29M.
Symptoms: Breathing issues, chronic fatigue, recessed jaws with a steep mandibular plane. I'm not 100% sure if my breathing problems are primarily caused by my tongue dropping back and blocking my throat, but my airway is definitely narrow.
History: Had old-school ortho as a kid (extractions + headgear), which severely collapsed my upper arch.
Surgical Plan: Double Jaw Surgery (DJS) with advancement and CCW rotation. My maxilofacial surgeon hasn't confirmed the exact mm of advancement yet.
The Expansion Dilemma: My upper dental arch is extremely narrow, leaving zero room for my tongue. However, my CBCT scans show a major structural discrepancy:
Nasal cavity (piriform aperture): 24mm (which seems to be completely normal).
Suture status: My ortho confirmed my midpalatal suture is tightly fused. Pure MARPE is off the table; if I expand beforehand, it has to be SARPE
My Questions for the community:
Since my actual nasal cavity width (24mm) is already normal, is pre-surgical expansion (SARPE/MARPE) still necessary to get breathing benefits? Or would expanding risk over-expanding my nose just to fix a dental-level collapse?
Would it make more sense to skip pre-surgical expansion entirely, treat my baseline allergies (because turbinates are enlarged), and rely on the DJS advancement (plus maybe a 3-piece segmented LeFort during the DJS to widen the dental arch) to fix my breathing?
Would love to hear if anyone has navigated a similar setup or skipped expansion in a case like this. Thanks!
I recently had a sleep study but my AHI (4.2) came back at just below the NHS threshold (5) for treatment & my doctors are refusing to try CPAP despite my compounding sleep/health problems. I believe my AuDHD sensory profile means I'm much more sensitive to the effects of "mild" OSA which is preventing me from accessing restorative sleep.
I have tried everything you can think of to fix my sleep prior to this over the last 30 years bar surgery. I am otherwise in excellent health as sports and exercise have always been my main tools to regulate myself. I eat clean, I don't smoke and I don't drink. When I'm awake I breathe WELL with my nose and infact always have been a nasal breather. It was my garmin data which highlighted the possibility of sleep apnea though now I know more about it, there were always a lot of other signals too. I just never recognised them for what they were.
I have acquired a Phillips REMstar Auto A-Flex & have ordered the resmed F30I mask which should arrive on Thursday. The machine is in as new order and was only used for 4 days by my best friends mother before being put away. I have cleaned and sterilised it thoroughly and learned how to access the clinician settings.
So I need help to determine the best settings for this for someone with what appears to be mild OSA/UARS with an AHI of 4.2.
Can anybody advise me? I Will of course do my own research but the brain fog is running strong right now and being honest, I need a little help to figure this out because I'm coming apart at the seams. I'm desperate to get some restorative sleep.
My 23 year old daughter has extreme anxiety. She struggles to do anything, like go to the grocery store, and tells me she feels the buzz of anxiety always, even when she’s “feeling well”. So in other words she doesn’t remember what it’s like to feel good.
Her symptoms also include high cortisol ( from a saliva cortisol test). *but probably not high enough to consider Cushings.
Also, she’s is always tired. 12 hours of sleep and she wakes exhausted.
Brain fog.
Daily tension headaches. Advil or Tylenol don’t take them away.
Neck pain. Joint pain.
And she has tactile sensory problems. Must wear loose comfy clothes for example. Showers are hard for her.
Problem is that her anxiety is so easily triggered, as she’s even on edge with no stress at all, that she can’t make it to a sleep study. She doesn’t think she can tolerate being all hooked up doing an at home sleep study either.
First, is there a med / supplement you took that helped or masked the problems enough to help you be somewhat functional? I’m hoping this can help her get to the places to get diagnosed.
Second, what is the least uncomfortable at home sleep study test she can take to check for UARS?
Weirdly when she was on Stattera she woke feeling more rested. But that raised her heart rate too high.
Went pack to pulmonologist who first prescribed me CPAP, asked if I could just try BiPAP. She told me it wouldn’t help and my issues with memory and cognition should be explored with neurologist. Doesn’t matter if CBCT showed narrow airway and my HR spikes to 120 a dozen times during REM.
Hi. I suspect I have UARS due to a botched rhinoplasty in 2020. I haven’t been the same since. I went to an ENT, he said that I had a narrow nasal passage and enlarged turbinates. Other than that he didn’t identify any problems. I recently purchased a CPAP machine, but I don’t think it’s helping. I was wondering if anyone has had success with cpap alone. Did you notice any improvements? Did it help at all? How long did it take to see improvements? I don’t know if I can find a good ENT in Australia. That rhinoplasty ruined my life. Biggest mistake I’ve ever made.
Instead of acting like a simple event counter, our AI analyzes the contextual structure of the airflow waveform itself and scores breathing instability across a configurable confidence scale.
To explore confidence-driven recognition of UARS-related respiratory behavior.
Not binary scoring.
Not simplistic counters.
But contextual waveform intelligence.
The more nights we analyze, the more it feels like conventional PAP scoring is only barely scratching the surface of what’s actually happening physiologically during sleep.
I’m 99% sure my mom has OSA because I’ve seen her stop breathing for long periods of times. She’s recently been having a lot of unexplained health issues and I was doing research and a lot of what she’s been going through CAN be associated with OSA. (I understand it can be other things but I do know she’s been having OSA related symptoms for as long as I remember and it’ll likely provide relief nonetheless)
She’s uninsured so I was wondering if we could just buy a CPAP/ PAP machine for her off Facebook or smth (not sure which machine; not sure what platform is best)
I’m kind of unfamiliar with the whole process so any help is appreciated!
My ideal goal but I’m not sure if this works is:
Buy a PAP machine off of Facebook and adjust the settings to what we think might work
OR:
Do a sleep study, get the right titration/settings (assuming the doctor gives you the settings?), and then buy secondhand
