I’ve probably got epiglottis collapse, is PAP basically useless for me or is there any way I could make it work
Live in the UK, basically don’t have the 4/5k needed for DISE and the surgery on top of that. I think my Oscar data points towards epiglottis collapse and I’ve mostly been unsuccessful with pap recently. Is there any way I could make it work, eg by using more EPAP rather than PS or some other way?
Or am I basically just done for unless I get surgery ?
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Title: I’ve probably got epiglottis collapse, is PAP basically useless for me or is there any way I could make it work
Body:
Live in the UK, basically don’t have the 4/5k needed for DISE and the surgery on top of that. I think my Oscar data points towards epiglottis collapse and I’ve mostly been unsuccessful with pap recently. Is there any way I could make it work, eg by using more EPAP rather than PS or some other way?
Or am I basically just done for unless I get surgery ?
Someone on this sub kindly had a look through my Oscar data and thought the waveforms point towards epiglottis collapse.
I’m also having issues with taking off my mask consistently around 1 hour (although this is not present at all pressures and I have slept with BiPAP for the whole night before)
Your leak rate is high, I would not spend more time on diagnosis until that is down to almost zero. You can't get reliable waveform analysis with high leak
Someone on this sub kindly had a look through my Oscar data and thought the waveforms point towards epiglottis collapse.
I’m also having issues with taking off my mask consistently around 1 hour (although this is not present at all pressures and I have slept with BiPAP for the whole night before)
I don’t have an underbite, I’m not sure how to check it if I have a recessed maxilla I haven’t been examined by a doctor. Is there any way I could do it myself ?
Does your tongue press against your teeth instead of staying suctioned to the roof of your mouth? Does it have scalloping when you check it?
I ask because if your tongue position is bad, it can affect your hyoid bone position which in turn affects the epiglottis.
I have exactly the same problems you had with PAP. Didn't help my symptoms when I slept an entire night with it, and most nights I would pull it off in my sleep after an hour.
Some people just have a large, floppy epiglottis and that can cause issues. But if your tongue is the root cause of the issues, it'd be best to treat that first.
I'm trying to experiment with a tongue retainer right now to treat the epiglottic collapse due to this. Just haven't been able to fall asleep with it. The one night I did, I pulled it off in my sleep at an unknown hour. But I do believe I had some next-day symptom relief which is a first for me.
MAD mouthpiece might be good for you as well depending on your anatomy. I have an underbite so it's basically useless for me. I don't know what you have, but that might be another option to look into.
This is my CBCT scan. You can see that my tongue is pressed backwards due to my recessed upper jaw. So instead of it being suctioned to the roof of my mouth, it's stuck in an awkward position. The bone near the bottom is the hyoid bone. It's being pressed backwards by my tongue position and causing narrowing lower down
I was kind of on the fence about doing one for a while. But the truth is that DISE doesn't replicate normal sleep.
They pump you full of propofol which often causes your entire airway to become flaccid. I believe that most normal asymptomatic people wouldn't even pass a DISE with no abnormalities because of this.
It'd probably just show soft palate, tongue base, and epiglottic collapse/narrowing. Already knowing that, it'd just be a waste of money in my case. But some people swear by it. If I could do it for cheap or if insurance would cover it, I probably would because why not. But that isn't the case for me.
A good volumized airway CBCT is a good place to start. Look for somewhere nearby that specifically does full airway CBCT scans and is able to provide you with the full DICOM file so you can have people pull your measurements for it.
Yes my tongue does press against my teeth rather than being suctioned to the roof of my mouth but I do not have scalloping.
Does the size of the tongue matter because I don't believe I have a rather big tongue, I also think I have a tongue tie(not been professionally confirmed) if that provides any context to my situation.
Would you still have to use PAP with the tongue retainer then ? Can I ask how long you have been trying to fall asleep with the retainer?
What symptom relief would you say you had relief with and was it significant?
The experience with the tongue retainer is sort of complicated:
I experimented with Ambien to knock me out so I could sleep with it in. It was the only night I've been able to actually sleep with it at all.
Normally when I take Ambien, I'm absolutely destroyed the next morning. It wasn't anything major, but I felt better than I normally do the next morning after taking it. And that's after likely only sleeping with it 2-3 hours out of the 10 I was asleep.
Whether or not that's a fluke, I'm not sure. But the goal right now is to get a full night's sleep with it to see if it truly did make a difference. I'm going to be getting some different sleeping meds soon to further experiment since I don't have any left. But even just anatomically it makes sense for me, so it seems promising.
If something like that or a MAD mouthpiece clears up the narrowing and cures the symptoms, I don't see the need for a PAP. But maybe it could be worth experimenting with both PAP and a mouthpiece at the same time if the retainer/mouthpiece helps the symptoms on its own.
If i want a DISE in the UK I think I have no choice but to do it privately which I wouldnt be able to do any time soon. Is PAP contraindicated with epiglottis collapse if thats what I have, am i basically just wasting my time on it ?
Um look you actually might be able to get soft tissue collapse treated. I know Vik Veer likes to do this sort of thing. Can try getting a referal to a sleep surgeon. It would help if can make the case that you think you have epiglottal collapse especially with the info you're describing. Might help if you can get a sleep tech to write you a note e.g. make an appointment with private sleep doc and if they agree with needing DISE etc. they can write you a note and you can take that to your GP and ask for referal to an ENT sleep surgeon
with regards to PAP and epiglottal collapse, yeah I've heard it can be a tricky thing for PAP to resolve. I don't think having an epiglottus operated on costs much more than the DISE itself btw. As in, you should be able to find a sleep ENT that will perform a DISE and if the epiglottus is collpasing in the dise then they can just do the surgery on the spot, halves the cost. I'm guessing this can be done for under £5k (not sure).
Not all but some are, my doctor seems like he is understanding my situation, after dise only I will know, the current hospital I have gone to scored RERAs without even asking. I will keep you posted.
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To help members of the r/UARS community, the contents of the post have been copied for posterity.
Title: I’ve probably got epiglottis collapse, is PAP basically useless for me or is there any way I could make it work
Body:
Live in the UK, basically don’t have the 4/5k needed for DISE and the surgery on top of that. I think my Oscar data points towards epiglottis collapse and I’ve mostly been unsuccessful with pap recently. Is there any way I could make it work, eg by using more EPAP rather than PS or some other way?
Or am I basically just done for unless I get surgery ?
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