18 year old with UARS! Just had a sleep endoscopy!

So after endless doctor trips i finally had a doctor who was willing to perform a sleep endoscopy and as well as fix my septum!

Turns out my epiglottis was really floppy and was the source of a lot of my grief, i tried cpap with no luck and am only 10% bodyfat.

Has anyone ever had an epiglottopexy?

most people still need a cpap after being chopped up. google the stats

First thing to learn as you grow - never base anything you do medically on what others have done - your body is different in 1,000 ways and what works (or not) for others won't tell you what will happen or not to you. What does help is getting at least a second opinion and using the brain you have. You are very young to make permanent anatomical changes and if there is any less permanent way to deal with the issue, even if it seems like a drag to bother with nightly, and it's at all effective in helping your problem, I'd maybe go that route - there's always time to cut, but none to grow new parts. People here may be correct to be careful about getting surgery for apnea (or UARS) because apart from certain procedures to clear nasal obstruction, surgery can seem to have fixed things short term, but apnea seems to return within a year for a majority - and surgeons do love to get paid for cutting.

You said you tried Cpap... to us that's just par for the course as most people who 'try' it don't get the help needed to fit and adjust the 'right' mask - it can take a while to find 'yours' and is usually the reason many give up too soon, but it's worth finding it and we can help you do that. The other main reason is that doctors who know (supposedly) lots about apnea - and most don't necessarily do so - don't understand about the equipment so end up prescribing the wrong settings for people - another place we can definitely help, especially after we get a look at their results of overnight Cpap use with the free software - much more useful and comprehensive than apps that come with machines - designed by a forum member and that most here use routinely. It's amazing what little tweaks can do to change how well you sleep!

So take your time, ask all your Q's here, and please tell us what machine - model, not just brand - and mask you've tried so far, and we'll tell you how to use the software. Please come back to this thread so we can follow the sequence of things.

I've read of a couple other people with a floppy epiglottis who were diagnosed with UARS... also with minimal help from cpap. if you search around on these boards I think you'll find at least one poster.

anyway.. glad you found your cause.

marunic wrote:So after endless doctor trips i finally had a doctor who was willing to perform a sleep endoscopy and as well as fix my septum!

Turns out my epiglottis was really floppy and was the source of a lot of my grief, i tried cpap with no luck and am only 10% bodyfat.

Has anyone ever had an epiglottopexy?

This is an old thread but might be helpful to your situation.

http://www.sleepnet.com/noncpap23/messages/103.html
""But what he saw was epiglottis falling back to obstruct the airway. He said this explains why using the CPAP doesn't help because the cpap literally gets blown down by the cpap to close over the larynx and therefore blocks the trachea and windpipe. He suspects that many of the folks who can't seem to get much relieve via the cpap probably have this problem. Any other points of obstructions would normally be pushed opened by the positive cpap airflow. But this airflow works against you if the epiglottis is the problem. .(The 1st abstract I've listed mentions this problem).It seems from what I've read that around 10% of apneiacs probably have Laryngeal Obstructive Sleep Apnea caused mostly by a large and/or floppy epiglottis (obstruction at the level immediately below the base of the tongue where the larynx is located). Sometimes it's caused by other problem in this area like with the larynx. He recommended that I have a partial epiglottidectomy done.""

Regarding the proposed surgery, I would get another opinion and possibly a third. What I am unclear about these surgeries is do they cure your problem or at least enable you to tolerate pap therapy? Those are answers you need from your surgeons.

By the way, I met someone on the now-defunct sleep apnea board who had a similar problem. He chose a dental device and at the time was doing well with it. Personally, I found it more intolerable than a mask but many people have done well with it. You might want to ask your surgeon if this may be a possible option to look into.

Best of luck.

ajack wrote:most people still need a cpap after being chopped up. google the stats

I think that applies to people who have traditional sleep apnea (that is, palatal or tongue base obstruction) who end up getting UPPP.

In this case the data you're referencing would not be relevant here, as this particular individual has a floppy epiglottis which wouldn't respond to cpap.

marunic wrote:So after endless doctor trips i finally had a doctor who was willing to perform a sleep endoscopy and as well as fix my septum!

Turns out my epiglottis was really floppy and was the source of a lot of my grief, i tried cpap with no luck and am only 10% bodyfat.

Has anyone ever had an epiglottopexy?

If I'm reading this correctly, the OP has already had his surgery! He no longer needs lectures about why not to have surgery.

.

marunic wrote:Has anyone ever had an epiglottopexy?

Plenty of information here - https://www.google.com/search?q=epiglot ... leep+apnea

You won't find many people in this forum who are knowledgeable about the procedure. But, you will find many who will give you an opinion regardless.

marunic wrote:So after endless doctor trips i finally had a doctor who was willing to perform a sleep endoscopy and as well as fix my septum!

Turns out my epiglottis was really floppy and was the source of a lot of my grief, i tried cpap with no luck and am only 10% bodyfat.

Has anyone ever had an epiglottopexy?

@marunic

Just wondering ,what did your sleep study look like? I assume your AHI was < 5. Did you have many RERAs or mainly EEG arousals? Did they use a Pes (throat sensor) in your study?