Nice, you should link the pubmed papers that go over ENS, specifically the very thorough Scheithauers paper which completely explains ENS scientifically and for effective surgical treatments (IMAP, Nasal Floor, Augmentation) there are quiet a few papers incase a desperate ENS patient sees this.
I empathize with you regarding ENS being like a dial, people often think its like a binary system thing, 1 you have it and 0 you dont, when its actually a wider range and hence why the doctors / scientists use the ENS6Q which ranges from a total score of 0 to 30, and its only considered ENS when your score rises above 11 because a score less than 11 is considered "normal" side effects of turbinate surgery, specially in the dryness and crusting domains.
The suffocation symptom which is the tell-tale symptom of ENS is the worst, and it gets very concerning when the fight/flight response is chronic due to the suffocation feeling which completely disables sleep and therefore you become suicidal. I have to emphasize how it literally disables sleep, its not that you fall asleep and the sleep is low quality, no, its that you CANNOT sleep at all, its not possible to fall asleep because your nervous system jerks you awake as soon as you feel drowsy to sleep, its a doom'ish feeling when you are exhausted and you cant sleep at all which very acutely exacerbates suicidal tendencies.
Fortunately I have seen that a good number of cases that have exacerbated suffocation (hard to quantify since its so subjective) are usually cases in which a lot of volume has been removed from the turbinate and are usually candidates for implants which have shown to address the suffocation symptom significantly and has been shown to decrease or eliminate suicidal tendencies because they get their sleep back.
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u/ResidentPositive8458
If people are on this forum contemplating turbinate reduction. Please re-read the OPs post. This ain’t a joke. It’s a nightmare, even if you get mild symptoms, never mind extreme symptoms. None of the new techniques protect you from ENS. Lots of ENTs will lie, they will reject and gaslight you after. Pharma and the medical system is a profiteering scam. Always go the natural healing route
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u/Grimboch
Ents are destroying peoples life because of Turbinate reduction Operation at least they should tell me about the Emtpy nose Syndrom (Leere nase Syndrom, syndrome du nez vide) before the surgery . the op has destroyed so many lives ( Still not recognized)
5
u/Echopine
Extremely well written and accurate. It’s a literal horror movie if you’re tipped into a symptomatic state. Not worth the risk no matter how small. UARS is bad. ENS is life ruining. Both is incomprehensible.
I agree it is the lack of sleep that kills people. I too was jolted awake for many weeks and I thought with absolute certainty I was going to die. Life is still hell and I live in fear of it getting worse everyday.
4
u/Grimboch
this is hell
4
u/xThrow-Me-Away-Josex
Wonderful post and so well written!
Are there any similar risks one should be aware of with a septoplasty and spur removal? I see comments here about having it in writing that turbinates will not be touched - is that a thing?
The ENT world is in large part in the Stone Age - barbaric, non root cause soft tissue procedures that people go into blind to the true consequences. Maybe a septoplasty and spur removal is an example of an exception, because fixing this issue can allow the turbinates to shrink naturally over the subsequent few months.
Loved your comment of “your turbinates are enlarged for a reason, find that reason”.
3
u/Hour_Hospital_9068
I’m sorry for what you’ve been going through. I haven’t had turbinate reduction myself, but my kids (both under ten) had it done years ago when they were 3 and 5 during tonsil and adenoid removal for sleep-disordered breathing. I’ve already struggled with guilt over the tonsil removal, especially since it maybe helped but certainly didn’t cure their issues, but now I feel sick over the thought that the turbinate reductions could’ve damaged their nerves and/or set them up for other issues in the future. The ENT assured us he was conservative (radio frequency ablation, iirc), but what are the chances of this harming a child?
3
u/idkagoodusernamee
Wow, what a post. I can’t even begin to express the empathy I feel you for. I’m scheduled for a turbinate reduction and deviated septum surgery in a few weeks. I developed severe heart failure after the Covid vaccine at 29 years old with an ejection fraction of 8%. They almost sent me home from the hospital because I was “young and healthy, and probably dehydrated stressed out and tired” so the “it’s safe, it’s so unlikely to happen” argument never works with me anymore. I’m so glad I read this, and I really hope to read more from you if you feel up to sharing it. Frankly I’m anxiously awaiting. Words cannot express how much I feel for what you’re experiencing. And thank you so much for sharing.
I very much want free nasal airways, so bad. My sleep is starting to really hurt my life, desperately. But it sounds like comparing apples and dinosaurs compared to this. Ugh
3
u/PjeseQ
So if you're scheduled for FESS but decline any surgical intervention in your turbinates, you should be fine?
2
u/Low_Task_7499
I have been ising azelastine fluticasone nasal spray lately and it’s helped my sleep. But I am a bit worried now about further use since I have experienced dryness and other things since the turn reduction. I am curious, what do you think were the reasons as to why you developed ENS 8 years after surgery? Did it Get Worse gradually or just suddenly woke ut and had full blown ENS?
2
u/Soft-Buy-6999
is xlear an ok nasal spray for long term use?
2
u/External-Scholar1567
This is super well done. Thank you. I’ve had a septoplasty and turbinate reduction done several years ago. I don’t think I developed ENS, but I did just get surgery for Nasal Valve Collapse using the Dolan technique and tightening my nasal side wall. Could this cause ENS too? I’m worried now I’m not even 2 weeks post op. Also, ENT said to use nasal spray rinse. Should I stop that immediately?
2
u/bros89
Thanks for the write up. Is there anything that can be done to cope or heal?
2
u/UARS-Stinks
Thanks for letting other's know and to spare them.
Waiting for part 2.
BTW: I read about some clinics in Europe treating ENS with capsaicin. You might want to give it a try if you yet haven't.
2
u/3wildflowers-5
Wow I am so, so, sorry you have had to go through that. Are you doing better now? I hope so.
Are nasal sprays and rinses dangerous also for people who have not had the turbinate surgery?
2
u/External-Scholar1567
Are there differences between radiofrquency, microdebrider, and physical removal for turbinate reduction as it relates to ENS?
2
u/Realistic-Dog2630
My doctor recently recommended turbinate reduction along with a septoplasty. I told him I did not want turbinate reduction. He secured with me to the point that I do not trust him. So neither procedure has been done.
2
u/Mundane_Fig2810
Thanks for the sharing, I read the whole thing, but with these questions:
Do you think everyone who went through the turbinate reduction will develop ENS at some point post surgery? That sounds scary tbf. If not, what’s the percentage? Are there any warning signs?
I had a severe deviated septum with allergic rhinitis since kid, these also resulted a severe swollen turbinate on my right side nose(it is almost completely blocked). 1.5 years ago I did the septoplasty with turbinate reduction specifically at a doctor in Germany who is conservative at it.
He reduced it and other doctors say it is still a little swollen after the surgery. I felt really good and nothing weird on my nose ever since, I can finally breath through my right nose again. Should I be worried?
1
u/samagreat12
I am thinking of getting MARPE, I had spetoplasty and turbinate reduction in December 2024. I feel my left nostril is little bit more open and my right nostril gets congested when I lie down or try to sleep. Will I ever get ens if expand by 10mm?
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I have attached my cbct which was taken 3 months after surgery.
1
u/weird_well123
Check the pinned post on r/uars. There's some other info at old.reddit.com/r/ensinfo.
1
u/Realistic-Dog2630
I’m just brain storming. I currently use an ASV machine. Would an ASV set to a high pressure support assist with breathing during sleep?
1
u/Low_Task_7499
Do you have any thoughts regarding bipap use and risks of developing ens? I have had a turb reduction about 2 years ago. I am asking because I sometimes Get dryness if I open up my nose with Intake breathing strips, or even if I just mouthtape without the Intake strips. It seems like if I open up my nose or strictly breathing through the nose at night with the mouth taping that my nose starts to hurt and gets dry. Pondering whether the increased airflow from bipap would somehow damage my nose more, or that the remaining turbinates would not be able to handle it? I guess using the humidifying hose should help. I sort of have to try bipap tho because of the debilitating uars.
I also remember feeling that my nose felt too open the first 2-3 months after the turn reduction, but then it went away. Only usually experienced dryness or nose pain if I try new things for the nose such as mouth taping or Intake strips or steroid sprays and such.
1
u/PjeseQ
Quite a bit of comments on expansion being an alternative to soft tissue surgery. Unfortunately, if eg. your recesses are fully obstructed, then I learnt FESS is your only option. No expansion will fix this.
Similar story for Haller cells - most of the time, they gotta be removed and that's it.
Sucks to be born with faulty airways, I hope I will finally get rid of my REM-predominant shitshow.
1
u/angelxdustx101
Man I am so terrified of this. I had a septoplasty and turbinate reduction surgery done 3.5 years ago. Doctor only had the splints in for 2 days. I kept having issues with my right nostril swelling and blocking airflow so I had another in office reduction 6 months after the first. Worst fucking experience in my life. Now 3.5 years later I still can't sleep at night because the second I lay down my right nostril completely closes off. I have all this sinus pressure and mucus and I cant get any airflow thru! Only half of my nose works. I have another consult scheduled with a doctor in Las Vegas but IDK if she tells me I need SMR or more reductions done that I have the faith to do it.... But I cant keep living like this either!! Its every single day of my life I go thru this.
1
u/turbosecchia
Any danger with azelastine sprays?
1
u/United_Ad8618
hey did you ever look into blood pressure medication in your journey of trying to tackle the turbinates? For example guanfacine or something like a α2-adrenergic agonist for adhd?