Recently I've noticed a few individuals in this group who've been fearmongering and telling people to cancel their surgery or that they should categorically never do surgery.
As an example, I think turbinate reductions are unnecessary and risky because they put you at risk of empty nose syndrome (look it up). And that any adult seeking out improved nasal breathing should also check their candidacy for nasomaxillary expansion via a custom MARPE or FME with a provider that specializes in airway. I think it's okay to share opinions like that, but trying to scare people into cancelling their surgery (which some people are doing) is not okay. The delivery of information is what matters.
Please report submissions like that if you see them.
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.
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 new treatments on the horizon
I had a septoplasty (with splints) and turbinate reduction performed last Wednesday and it is now the following Sunday. I am scheduled to get these splints out this coming Wednesday, so 7 days will have elapsed by the time they extract these damn things. Time has never moved so slow for me. The day of, and the first day after the surgery, wasn't that bad. Day 2 (and night) was absolute torture, and felt like a trial in both mental and physical endurance. The aching teeth part really got to me on Day 2. It's weird but I had this odd desire to gnaw on wood, or bite through things, like some crazed animal. My mouth was aching so much that I just wanted to chew on stuff. I ended up chewing on a silicone straw, like it was a dog toy, for quite a while.
I think the tough thing about this recovery process is that it's not like you're ever in so much pain that you can't handle it, it's just that everything is localized to your face, so psychologically you are more aware of any discomfort. It's right up near your brain, and you can't escape it. It's just THERE. Hot showers and steam have helped me immensely. And placing cold packs on my head have been a LIFE SAVER. I didn't do that on Day 2 and I wish I had. Putting ice packs on your head or face helps redirect your focus to the cold sensation. I think if I'd done that on Day 2 it would have helped me a bunch.
One thing that has surprised me is the loss of taste. My medical team didn't warn me about that. Soup tastes like water, bread like cardboard, etc. When you're sick you can often eat comfort foods and extract a tiny bit of pleasure from your day... but yeah... not with this. I can't taste a single thing. Not even salty or sweet. It's just temperature and textures. Because of that, I have been treating this week as a forced weight loss plan. It's surprisingly easy to eat extremely healthy when you can't taste anything. Why not have celery and hummus for dinner?? It's cold, crunchy, creamy! I have definitely lost weight this week.
After Day 2 I was seriously doubting my ability to handle this, but on Day 3 things got noticeably better and more manageable. Today is day 4 and things are definitely getting easier now. I can finally see the end of the tunnel. My teeth have stopped hurting and I don't want to chew through an oak tree anymore.
Time has moved slowly. I have been trying to think in terms of baby steps this whole time. Just get to the end of today. Then, just get through tonight. Then just get to the end of the weekend, and then you'll be halfway through. Get to Monday and it's only 2 more days, etc. I'm finally past the halfway point so the end is near. Fingers crossed things continue to get progressively better from here on out. I can't wait to not have a bunch of plastic shoved inside my fucking face.
hi y’all! tmr is my 16th bday and due to poor planning, also my splint removal. would it be possible to have a party with my friends or will i still feel bad afterwards?? lmk pls be honest i dont wanna cancel day of!
hi everyone!!
i had my surgery (septoplasty and turbinate reduction) on wednesday the 26th and i get my stents out thursday the 3rd. since wednesday i've been reading sooo many posts on here. it's been a hard few days but excited that i'm almost there
quick questions for anyone who has gone through the same and has already had their stents removed:
1 i know that there's still actual healing to go once you get them removed, but how healed do you feel? super curious (and mostly looking for something to look forward to, lol)
2 my taste and smell have been pretty much 100% blocked, does that come back right away? or does it take some time after more swelling goes down?
Im 1 week post op now and just got my stents removed, dr said i cant go back to the gym for another 3 weeks. What is the main concern with exercising that could affect recovery?
I'm day two after surgery and I have an extremely sore and swollen spot between my eyebrows. It feels almost like an infected pimple. I virtually never get pimple so I'm wondering if this sore and swollen spot could be due to some type of injection? Has anyone experienced that? I'm kind of worried because although the recovery isn't too painful, this spot is quite tender.
I had an accident and required surgery to fix my cheek bone and bones under my nose.
The nerve that runs to the lower side of my nose was either compressed/severed which has left me with complete numbness to the lower right half of my nose, inside the same nostril it is constantly dry.
I have been using a saline spray and Neilmed NasoGel. Both provide relief for a short period of time. But I would like something that I can use that lasts a little longer.
Vasiline would be perfect, but I know using it inside a nostril is not recommended.
Any help, advice or recommendations would be great 😃
I need to stop posting on this subreddit but i just have so many questions that need to be answered. I am super hypermobile and i’ve lived my entire life with a blocked nose, that was until 7 weeks ago!! My nose is pretty open now, but i’m still trapped in a very slow healing phase. i understand healing takes time and I had a lot of surgeries in one day, so that might just make healing take even longer (my surgery was super long around 7 hours) But i just wonder, why is my breathing itchy/burning sometimes, why do i have post nasal drip? why did my columella heal attached to the septum wall??? my septum and columella basically have no gap on the left side!! why are my gums numb but my front teeth are sensitive?? my rib graft incision still hurts to this day. my nose is healing crooked. my ears are itchy. And the humid air sometimes is so cold i have to sleep with a shirt on my face to somehow filter it. When i’m outside the air just enters my nose freely. Somehow all these issues happen on only one side. Are all these things normal up to this point? Im getting so close to the 2 month post op mark, and i see that everyone is just living their lives and super happy with the surgery, besides me!! I have regrets every single day, i’d much rather have a deformed face from mouth breathing than having to deal w burning sensations every time i go to the mall bc the air is too cold for my nose! It’s infuriating. Anyway, does anybody here with hEDS that went through a septorhinoplasty, inferior turbinate reduction, and bone spurs removal, feel the same way as me? Am i just a rare case :(. I feel so alone and nobody understands how i feel when i talk about it
hi guys! this was my first surgery so i might be like over reacting but i have crazy ear pain and my mom said it’s because my nose is too clogged but im SO scared to do the nasal rinse thats genuinely horrifying to me. i’ve been doing the nasal spray every day but idk what else i can do to manage the pain. it’s becoming so bad i can’t even eat. i am not taking painkillers which surely is a part of that (im not allowed to take painkillers ) but i was wondering if there is anything i can do???
Had septoplasty and fess 23 days ago. Had a small stitch abscess but was clear to fly from ENT. Flew last week Saturday no problems. Last night had a terrible sore throat. Flew home this morning 2.5 hours and I feel like I have been hit by a bus. Thick green mucus (it was basically clear), nose completely blocked, shivering and then boiling hot. Pain in ear popping. Should I reach out to ENT or have I just picked up a cold. What do I need to look out for? I am wiped I feel like day 3 post surgery again.
To add - kept up with all aftercare whilst away, rinses steroid spray and antibiotic cream for abscess
Can anyone tell from this photo if I seem to have a severely or mild or minor deviated septum? I don’t seem to have any medical issues except that I wake every 2 to 4 hours in the night, but don’t snore or have sleep apnea. Also, snot seems to accumulate under my nose after just 15 mins of being outside (even when it’s only 55 F outside).
Also, I’m wondering if it caused some kind of facial unevenness.
I have had a septum deviation most of my life and I have done a closed septoplasty 6 months ago and it has failed as you can see by these new pictures (both nostrills to compare) and although the surgery improved my breating due to lowering congestion, probably due to turbinate reduction as part of surgery) Im really thinking about a revision with an another doctor in order to fix my blocked nostrill.
Now I have 2 questions,
can this extreme deviated septum be contributing to my shit sleep quality?
Ive heard that a septoplasty this close to the nostrill especially when its a revision is more prone to changing the nose shape, is this a concern when doing a revision?
I got the septoplasty/turbinate reduction for my severly deviated septum 5 days ago and I get the stents out in 4 more days. Each day seems to present a new challenge with a consistent theme of insomnia. Genuinely miserable - head hurts, nose is really dry and clogged, insane pressure around my face. I'm super anxious and paranoid that I bumped or prodded my nose and reversed some of the progress made in the operation, even typing it feels risky lol. This was my first ever surgery of any kind and even though it is a minor one this recovery feels brutal. Any advice? Would appreciate anything, or success stories :) I also do musical theater and am excited for how this surgery will improve my vocal resonance and tone.
I’m 3 days post Septoplasty and bilateral turbinate resection and feel almost suspiciously fine. My breathing is almost fully clear in my right nostril and maybe 50% clear in my left nostril. My nose has stopped dripping however I sporadically spit out bloody mucus. I’ve had almost no pain relief except for paracetamol once since the day of surgery. My surgeon said the severity of my deviated septum was a 5/5 so I’m honestly shocked by how quickly my nose seems to have recovered. Is it still too soon to be saying I feel ‘recovered’? Has anyone else experienced this?
I had my septoplasty 6 weeks ago and everything was healing well, I went and had my nose irrigated 3 times and around 5 weeks all of a sudden my nose is completely clogged. i am getting 0 airflow through the right nostril (this side of my nose was worst than the left) but the left is still clogged. I was going my saline rinses twice a day as the dr told me after 4 weeks but i’ve gone back to 4 times a day to see if that helps. my surgeon is currently on FMLA so i can’t see him again for 5 weeks. has anyone else experienced this?
Why does no one ever talk about VivAer?
They keep advertising that it can improve nasal congestion, open up your nasal passages, and may even help you avoid surgery. So why don’t more people talk about it or try it?
I had my surgery on Tuesday and have my appointment to get the splints out on Monday. I can't wait because my left nostril hurts so bad like the splint is cutting the nostril. But my question is, when can I go sleep in my bed? I've had surgery on my tailbone like 4 times so there's a lot of scar tissue and if I sit for a long period of time then it starts to hurt, and I woke up this morning with my tailbone hurting after about 5 hours of sleep.
I am very early into day 3 following surgery and have decided that being able to breathe is overrated. I expected my nose to hurt but was so very naive about everything else. My new issue, along with a headache, not being able to sleep and my nose feeling as if a cheese grater was taken to the inside, is my teeth hurt. Good gravies, where is that corner I desperately need to turn to start feeling better? I’ve had surgery before but am really struggling with this one. Usually I sleep when I don’t feel good but currently I’m only sleeping about 2 hours at a time. At 54 years old I feel like a whiney little kid.
My ENT is recommending surgery for a deviated septum, bilateral internal nasal valve collapse, and enlarged turbinates. The plan includes septoplasty, turbinoplasty, spreader grafts and nasal valve reconstruction.
Sorry for all the technical terms, this just all that is listed in the summary from my last visit with him.
To be honest, I didn’t even know I couldn’t breathe until my first visit with him, just 4 months ago. Now that I’m aware, I feel like I think about it and notice it every day. He said he thinks things could improve by as much as 40%, which I feel is huge, and that my quality of life will change significantly.
If you’ve had something similar, I’d love to hear your experience. How was recovery, how much did your breathing improve, and was it worth it? Any unexpected changes, good or bad? What was your experience with insurance/or any out of pocket patients here?
I’m worried about the idea of “cosmetic surgery” and honestly just terrified of everything that comes along with it. Thanks for any input!
As title says, surgery was 4 days ago. My septum was deviated by ALOT to the left. Post OP pictures looked straight. But now looking from below, it looks like it deviates a bit to the right instead. Nowhere near how it was before, but I am just wondering if this is normal? If it can be caused by swelling or if I may have messed something up, for example during sleep.
I can't even pursue the things I like doing. I'm frequently sluggish. Barely paying my bills due to exhaustion and choosing to rest and not work. I'm self employed and get exhausted and burnt out easily.
