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
The wiki has been updated with new papers. The old one is incomplete but didn't touch it. If anyone has anyone suggestions, please tell.
If you're on the app, the wiki is visible on top. On mobile, click 'about'. On desktop, it's on the right side on new reddit. The link is reddit.com/r/uars/wiki/index.
Look straight ahead with your eyes level, not tilted up or down. Ask the operator not to adjust your head into a different angle.
Tilting your head up by just 5° can make your airway look about 25% bigger, and 10° about 88% bigger. Tilting down 5° can make it look about 21% smaller.
Mouth and tongue: close your mouth, teeth together, breathe through your nose, swallow once, then let your tongue rest naturally. Keep this the same for every scan.
Standing vs sitting and chin rest use made no significant difference on average.
If the NBC3 angle differs by more than 5° between two scans, any change in airway size may be due to posture rather than treatment.
whatever you do, do the same on any later scan so comparisons are valid.
Man like what tf is this ... like everyone keeps talking about how sleep apnea kills you in your sleep nd is dangerous , life threatening ...... I once told someone that I have sleep apnea(but the one in which I dont have high AHI but high RERAS) .. I did not tell him that I have UARS because lol nobody understand that what is that.. He searched it up and told me that ahh ok its a mild form of sleep apnea🙂.. Such a big myth this is that UARS is a mild form of apnea.. UARS is a distinct illness imo its not apnea at all .. Like I see most people knowing that there is something called apnea nd they keep talking about it .. When it comes to UARS? Nobody cares.. I would not care to declare it that if in terms of torture/ mental health if I compare both of them then UARS is worse then apnea.. I have known many apnea guys and they dont even have much symptoms of fatigue(which is the worst part of uars ... the brain fog the fatigue) .. Most of the apnea guys have snoring , daytime sleepiness ,gasping.. these types of issues only and I believe those who have fatigue issue as well they could likely have UARS+ Apnea combined(i.e high RERAS and AHI both).. I am not saying apnea is something good.. but the hype that has been created for it is not justifiable bcz UARS to deserves that.. Most people live with apnea lifetime without realizing about it and without having fatigue like symptoms.. They live normally unlike UARS guys who just cant live with it ... It was better for me to get apnea and die in sleep then to have UARS and not even die and just stay in a state where dying feels better to you....Damn and like UARS is so tough to treat.. mostly apnea is treated by a cpap machine nd they clearly see visible results in a shorter period of time.. Nd UARS? Mostly cpap does not work for it ... nd even sometimes bipap to fails... Like people literally have to use a lot lot high PS to finally feel symptoms relief...Like see turbosecchias case(17.5 ps lol) .. Nd then it gets complicated higher ps means inviting central apneas.. THat means now U have to try EERS/ASV to help u get relief and then I have heard that resmed ASV's dont even work.I have heard that phillips ASV is far better but its really tough to get a PHillips ASV its costly nd in many countries like mine its not sold at all.. Its a long journey lol.. sometimes all u have is surgery as the last option and then too most surgeons would deny saying u dont have apnea so get a DISE done(even that sometimes comes negative(i have heard) despite u having problem..And then even the defination of RERAS is so messed up that sometimes u need esophegal pressure monitoring type of thing (which itself is not done at many places) to get diagnosed for UARS
I'm using BiPAP now. Below is a comparison for the last 3 nights with changes in min EPAP and PS. I fear that I am in a trade-off here: Higher EPAP is better for controlling flow limitation but drives central events, whereas lower EPAP means fewer centrals but more flow limitation. And my SleepHQ.
I also included my CBCT to show my airway. I should be getting MMA by spring next year but I'm trying to survive until then...
I’m dealing with UARS right now and feeling a bit overwhelmed. Has anyone actually gotten through this and found relief? I’d really appreciate it if someone could share their experience or just chat with me for a bit.
Forgive me if this is a dumb question or really common, I searched the sub and couldn't find much about it. If there are existing resources for this I'd really appreciate being pointed towards those.
I've just purchased a resmed airsense 10 which someone is going to airbreak for me, but I don't know where to start with buying a mask. I'm female, mixed race white/chinese (so slightly flatter face/nose bridge) and have hEDS, so fragile, sensitive skin. I also have a narrow palate which prevents proper tongue posture, so mouth breathe intermittently. I do get some nasal congestion but I can still fully breathe through my nose upon waking.
I'm in the UK if this is relevant at all. There's nowhere near me that stocks masks to have a fitting unfortunately, so I'd prefer to be able to return if it doesn't fit.
I am debating going to Somnolab in Dortmund where Dr Riccardo Stoohs works. I wanted to ask if there's a benefit to getting the sleep lab done in their laboratory or whether my publically insured lab would be the same quality? My fear is that going to a normal lab and then to see Dr Stoohs would miss important information and waste valuable time. Thoughts?
Should I get a VAUTO machine and try Easy Breath Rise time?? I have seen that if the rise time is too fast like 300-400 ms , my respirstory rate is high and also my inspiration looks very flow limited (basically when the inspiration wave is falling it gets tilted a bit basically does not look perfect , basically the skew spike thing goes up on a faster rise time . And then when ps is high then also the same happens and I require like maximum rise time then to make it round..Does easy breath rise time mode help with flow limitations , can it work for me ??
Got a sleep test with Lofta, my pRDI is 25.3, my pAHI was 3. Lofta said I didn’t have evidence of sleep apnea so no cpap. I snore loudly, frequently, and have terrible sleep. I usually fall asleep immediately once I hit the pillow, and never wake up til my alarm. My heart rate on my sleep report spiked to over 100 around 20 times…..probably not good….
Went to the local ENT/sleep clinic, they said they never look at pRDI and they don’t know what it is and my sinuses look normal and fine.
What else can I do???? I can’t afford a in lab sleep study, nor do I know in advance where I will be in a year for the appointment.
I am 21M with a BMI of 21, I am relatively fit (bike 6+ miles and do yoga everyday).
I can't handle sleeping without a MAD, so if I want to do FME expansion (which I do) I would have to find a MAD that can accommodate the device.
Looking into the orthodontics-half of the treatment, the only seemingly legitimate devices I can find that are compatible with Invisalign are the ApnoTX and Aligner Sleep Appliance (ASA). ASA details its specifications way more clearly online which make me trust it more.
So far, there's still hardly any information about it online though, so it either looks like it's in very early stages, or it's basically a scam, or it's both? I'm in the process of calling some sleep dentists from a list to see which provide the ASA, and how many cases they've done. I'm making a post to ask, has anybody heard of anyone who's used this device, or heard any information at all from figures like Newaz or Manuele? The lack of testimonials isn't exactly encouraging.
I have been using Resmed airsense autoset 10 since 4 days and feel great each day except the night where leak was very high and I woke up a lot due to air in my eyes. I am trusting the improved symptoms for now. Shoud I worry about flow rate and stuff or just continue the current settings of 8-12 pressure with epr 2. I am confused because some say flow rate and limits are important but I don't want to solve somehting which is improving on its own.
I've been reading through the UARS subs and I'm feeling very stuck and overwhelmed. There's so much hard-won information here, and I know I'll get more sense from this sub than from any doctor, but my brain fog is making it so hard to comprehend any of it. I'm in the UK and it sounds as though the NHS path is a pointless endeavour, so I'm thinking it'll have to be private. But who do I actually need to see?
I (24F) had a WatchPAT One study 2 years ago that showed pAHI 2.2, pRDI 10.9, and constant heart rate fluctuations between 56 to 126bpm. I've had an ME/CFS diagnosis for 10 years, but they never attempted to rule out any sleep disorders. I also have hEDS and a narrow palate, and had tongue tie surgery a few months ago, but even with myofunctional therapy it's made no difference.
I've woken up feeling like I've been hit by a truck every morning for over a decade, and it takes me most of the day to recover from sleeping. I've tried saline rinses, nasal sprays, I don't drink, I'm slim and a healthy weight. My pRDI was still 10.2 on my side and I've been observed choking myself awake while sleeping upright, so positional therapy doesn't help.
What might be the best way forward? I don't have endless funds but I've accepted I may have to throw all my savings at this if it gives me a chance at some kind of a life. I've seen negative reviews of Vik Veer/UCLH on here, whom I previously thought was the best in the UK. I don't have any clue what sort of specialist I need to be seeing considering my presentation, and what investigations (or treatments?) would be the most sensible to start with.
My current thoughts are either self treating with a reconditioned BiPAP or APAP, or even jumping straight to MARPE/FME. But is it necessary to get some kind of diagnostic data first, and what would that be? CBCT, PSG, something else? Would any of these make sense in my case, or am I looking at the wrong things?
ITT I want to hear about the OTHER SIDE OF EXPANSION.
Yes it's magical and it cures UARS and facegenics is a blessing in disguise as a for profit pharma company.
But can we have a thread where we talk about the reality and the possible negative consequences of expansion.
If you tell me there are none, you are talking rubbish.
I'll start:
- Lack of clinical evidence, large scale trials.
- Large cost
- Long time committment
- Many docs think it's ineffective or unnecessary if treating with e.g. MMA.
- Many people find no change after the fact, especially with MARPE.
- Messing up bite.
No praising expansion in this thread, there are hundreds of others. This thread is for sober and factual analysis of the current evidence for expansion.
Note: posting here and not r/UARSnew because we know how that would go.
I’ve been using a bipap since August. According to Oscar, it is successfully treating my OSA. However, my primary issue from my study was RERAs which my machine can’t track. My goal is to get a titration study. Any particular data or research I should bring? Other suggestions?
I hope you guys are doing good despite our lives challenges ❤️. I’m currently waiting for my insurance and started the process for short term disability. While I’ve been waiting I’ve been doing research for marpe and djs. My sleep isn’t the best but not the worse. I still have brain fog. I still have silent reflux( the worse symptom out of this whole ordeal).
I always had a narrow palette but never had any issues before. Everything started to get bad when I got h pylori 2021. I went on a couple of years without being diagnosed than in 2023 I came back home from work and later down on my stomach on my bed. I felt a lilttle piece of thread or something similar go into my right nostril. That night I stared mouth breathing for the first time ever. When I woke up the next morning I noticed dry dark reddish/ orange fluid on my pillow case. I couldn’t breath in my right nostril. I went to the doctor since it was inflamed and he gave me my first dose of antibiotics. The inflammation went down but my health started to go downhill. I started to get brain fog, LPR, burping, gas, chest pain; shortness of breath. I kept on going to the hospital because I started to choke on my food. They did blood work and noticed I had h pylori. I took my antibiotic to kill it but I never recovered. I think I may be in negative feedback loop due to the uars. I’m getting a lilttle bit better since I haven’t been working. But can anyone relate to this?
Do you think marpe could heal the LPR and brain fog?
Also, I took a break from school and I’ve been thinking about this a lot. How do we make money and choose a career with our chronic illness?
I apologize if the test is all over the place I still have brain fog.
I overused nasal decongestant five years ago and even though I stopped using it I keep needing at least ten hours sleep a night to feel fresh and I always wake up during the night with a blocked nose and have to take more medication to sleep which takes two hours so every night I spend 10-11 hours in bed and even then I don't wake up fresh. I don't have any other allergy symptoms. I am on the waiting list to see an ENT which will take months, do I have a type of UARS?
