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Palate still closing on exhale
#51
RE: Palate still closing on exhale
I have a little bit of an update, sorry it’s been so long since I’ve been online but really nothing has changed for me since the last time until today. I went to another ENT at a big research hospital in my state of MN, I’m not sure if we are allowed to name hospitals. He did a scope into my nose and had me lay back and demonstrate what it is I’m talking about that happens when I’m in the dentist chair or trying to fall asleep even partially supine. And you could see the uvula flip right back up into the nasopharynx and block it. So he recommended that UPPP surgery. He explained the problems with older techniques and showed me a diagram of their current technique which results in fewer problems and he thinks this will help a lot, although I will probably still have to use the CPAP. However because of Covid everybody’s elective surgeries are being put off so I have to wait till at least March, assuming my neck surgery doesn’t go through. If my next surgery happens then it’ll probably be at least late spring before I can do the UPPP. 

He says the way they do it now it’s just taking a V-shaped dart (ask a seamstress what a dart is if you don’t know) around the uvula and then stitching those edges together so that line of scar tissue where your uvula used to be and then slightly up into your palate is going to make it stiffer plus they also take out your tonsils since they’re in there already, and they do something with drawing the sides up tighter where the soft palate attaches to the sides of your throat. That way you don’t have a big line of scar tissue along the back edge of your uvula which causes fewer swallowing problems.  

So if you are having this palatal prolapse issue, I would encourage you to get to a really good ENT and have them push the issue with your insurance.

Some thing I’m curious about from anybody who has had this surgery done in the last few years, does it change singing voice at all? Because once Covid stuff is in the past I would like to get involved in choir again.
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#52
RE: Palate still closing on exhale
Terriergal, good to see you back. We have had some significant activity on Apnea Board recently when "SleepyCPAP" got on with his palatal prolapse problem and showed great improvement with the Alaxostent http://www.apneaboard.com/forums/Thread-...l-Prolapse He also has a review thread of the Alaxostent http://www.apneaboard.com/forums/Thread-...A-Approved
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
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Soft Cervical Collar
Optimizing Therapy
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How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#53
RE: Palate still closing on exhale
Im curious if this is the thing I have too ?
Doesnt happen too often (that I have noticed), but on exhale I get a quick closure .. like a "pop" that only lasts maybe 1/4 second. I thought about bumping my pressures a bit, but my numbers are good and I feel rested.
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#54
RE: Palate still closing on exhale
OK I just wanted to update you all and especially anyone else who is struggling with this palatal prolapse issue. 

I finally got my UPPP surgery done in April and I am pretty much fully recovered, although I need to have my follow up done this coming week and he wants me to have another sleep test. But I can tell sleeping is so much easier now. They tried to tell me not to use my machine immediately after surgery but there was no way I could sleep without it. I would have been snoring through those stitches and waking myself up with the pain. But my pressures are very low anyway so it wasn’t dangerous to use with the stitches back there. And then for a while I was alarmed that it didn’t do anything much and it was even harder to use my machine for a while. But now that all the swelling has gone down and everything is healed, I can tell a huge difference in my ability to Sleep in a comfortable position, and stay asleep !!

I did also invest in one of those medcline pillows systems, very helpful for shoulder pain. I don’t use the wedge all the time, but I use the body pillow constantly and I made a shredded memory foam neck roll out of silky fabric that I just sold into a long skinny rectangle. That helps a lot. I can adjust the firmness by shaking all the foam down to the end and then tying a knot in the case to make it shorter.

I still use the machine because I still have mild apnea on inhalation, but I don’t have to lie on my side with my face tilted toward the pillow in order to exhale. I can sleep pretty much on my back if I want, and that gives my shoulders some relief and my neck, all of which has been contributing to my pain levels and inability to sleep as well. 

As they said, the pain after UPPP and tonsillectomy  is terrible. But I think it was worth it. Next month I guess I will find out whether it’s still hard to breathe in the dentist chair wide awake!

I know there were some that were doubting that this was a real problem, and that includes doctors as well. They just didn’t understand until I talked to the ENT who did my surgery (which was denied by my insurance the first time and second time that I had anybody recommend it, and he had to appeal to get it approved). 

If you have this problem please find somebody who will see if you are a good candidate for this surgery, (and make sure they don’t use outdated techniques- basically my surgeon took a little wedge out where the uvula is and preserved the natural edge of the palate back there as much as possible). We had to drive 2 1/2 hours one way to see this doctor at a big nonprofit research hospital in our state.

UPPP may not get you off of the machine if you have this elongated palate/uvula/prolapsing palate problem but it will very likely help the machine work much better for you.

I find there are certain sounds I can’t wait anymore like the uvular oscillation gurgling sound, but when did I ever use that… except sometimes when calling turkeys. (Seriously!)? if I ever get back to hunting I guess I’ll have to roll the tip of my tongue for turkey purrs instead of the back. ?
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#55
RE: Palate still closing on exhale
(01-13-2022, 01:36 PM)DaveCar Wrote: Im curious if this is the thing I have too ?
Doesnt happen too often (that I have noticed), but on exhale I get a quick closure .. like a "pop" that only lasts maybe 1/4 second.   I thought about bumping my pressures a bit, but my numbers are good and I feel rested.

Sounds like the same thing, but if it’s not bothering you, then probably not as severe . 

mine slammed shut very suddenly & securely and would not open unless One of two things happened.  1. I opened my mouth and let the air come out there, which would cause the pressure to push the palate back open and the mouth leak defeats the whole purpose of the CPAP of course. It was either that or 2. wake up and open the back of my throat like a singer has to, and that of course defeats the purpose of CPAP if you’re constantly waking up. 

This happened to me every time I started to fall asleep and my throat relaxed. It also happened a lot when I was in the dentist chair, I could inhale while trying to keep liquids from going down my throat but I could not exhale. So they would have to stop and let me suction and breathe and then continue working.
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#56
RE: Palate still closing on exhale
(01-12-2022, 08:40 PM)Sleeprider Wrote: Terriergal, good to see you back.  We have had some significant activity on Apnea Board recently when "SleepyCPAP" got on with his palatal prolapse problem and showed great improvement with the Alaxostent http://www.apneaboard.com/forums/Thread-...l-Prolapse  He also has a review thread of the Alaxostent http://www.apneaboard.com/forums/Thread-...A-Approved

I had asked about this as well, I wasn’t sure if it was going to work long-term for me so I went with the UPPP. If my insurance kept denying me the surgery I probably would have tried it.

And now I get to have foot and ankle surgery in about a week and a half, I’m going to be the bionic woman pretty soon… and I’m only 52!?
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#57
RE: Palate still closing on exhale
Nice to see a report of UPPP working when used in the proper situation. I figured it should help people with palatal prolapse but your report is the first I have seen so far.

As you note UPPP rarely treats apnea fully since it only treats a portion of the airway but if palatal prolapse is an issue than UPPP or a stent seem to be the only real options.
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#58
RE: Palate still closing on exhale
It's good to hear of your successful outcome. There is apparently more than one way to solve this problem, and our member's experiences on Apnea Board are incredibly valuable in making a decision how to proceed. SleepyCPAP used a non-invasive stent and got great results, but no insurance coverage and ongoing costs. Still a remarkable story that nearly removes the need for CPAP. You had one of the classic palatal prolapse cases and it never responded to the mitigations we suggested. UPPP is not an easy choice, but it worked for you and your results are good. I'm happy to see this outcome for you and that we can point to these examples for others that suffer from this uncommon problem. Thanks so much for your follow-up.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#59
RE: Palate still closing on exhale
(05-18-2022, 07:48 PM)terriergal Wrote: Sounds like the same thing, but if it’s not bothering you, then probably not as severe . 

Ya for sure, I dont think Im anywhere near needing surgical intervention.   
I wonder if this is something that could get worse with aging ?

BTW, "Hello" from just north of you across the border !
MN is our go-to state when we want some "international" travel..lol
Pretty much just Grand Marais, Duluth, and Minni for the most part.

Glad things worked out for you.
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