Introduction - with UPPP scheduled

[seattleguy]

Hi,

About five years ago, I started coming down with insomnia. Couldn't sleep at all without medication. Tried a few things (Trazodone, etc.), moved onto Ambien, then finally got a sleep study done. Apnea, 37 events/hour. This was on Ambien, which the sleep doc said would make things worse (Ambien being over-relaxing), and prescribed me on another med which has worked well since.

I tried CPAP a few times but it never worked - masks leaked, and I felt claustrophic. I generally took it off after a few hours of seemingly no sleep at all.

My sleep doc finally referred me to a sleep surgeon, who took a look and did turbinate reduction, which did help with the breathing. I still had issues with the CPAP. To be honest, I tried it a night or two, not exactly a full two weeks.

Now he's on to removing my lingual tonsils (my regular tonsils are long gone) and UPPP. This guy is good - director at a teaching hospital, etc. - and he was honest about the side effects even after healing, and that I'd probably still need CPAP. We scheduled it a few months ago, and now the date is next week.

So finally I'm doing some research, and someone recommended I come here. It sounds like the surgery just won't do what I expect it to do - hopefully keep me off of CPAP. Wishful thinking on my part.

I'm 38, BMI is about 27 (so I could stand to lose 20 pounds or so, but not obese), and I'm not sure what to do.

Thanks.

[Gerryk]

Hi Seattle, I had my tonsils removed last spring and a UPPP. I was on a BiPap at a pressure of 21/17 and was having a terrible time with mask leaks. My doc finally said we had to do the surgery. I didn't even have enough room between my tonsils to put your pinky finger through without touching my tonsils or tongue. My tonsils were about golf balls size. I had the UPPP done also. I know people personally who had this done and they scared the hell out of me. However I have a fabulous surgeon which I believe makes a huge difference as far as pain and recovery. I was kept in the hospital overnight and sent home the next day. My recovery was a little longer because I also had marginally low thyroid levels. I also broke my hand a week before my surgery so I was off work longer for that anyway.

But immediately after surgery my pressure requirement dropped in half. My machine is now set to auto BiPap and the pressure is usualy 9/6 and has occasionally gone up to 11/7. I am supposed to have turbinate reduction surgery and deviated septum done this spring. I have never been able to breath through my nose so if this doesn't help my OSA at least I can breath through my nose. I have also lost weight with has helped my treatment. I was told that because of my sinuses that in combination with the deviated septum being fixed, turbinbate reductions and weight loss I may not need cpap any more. The doc did emphasize may not and said I probably will but my case has not been the norm as what we have done has helped so much.

My soft palate was trimmed as was the uvula. The uvula wasn't removed, rather it was sewn to my palate so it would become part of it.

I can not emphasize enough that the doctors attitude and experience has so much to do with this surgery being successful. My doc will only take on pt's she thinks has a possibility of this being successful. Way too many docs just do it to try it.

Best of luck.

Gerry

[seattleguy]

Thanks. So, did the reduction in pressure make much of a difference to you?

[Gerryk]

Oh god, it's like night and day. I can wear a mask and my treatment is very successful. My doc was going to take me off cpap because my numbers were so good, until I said I don't feel as good when I slept without it. She said that could be that I need more time to heel up or that a few events didn't show up on the sleep test. But it's not about getting off the cpap which I never thought I would. It was about being able to use the cpap so I could sleep. I can now breath better than ever.

I don't think any mask if not going to leak when your pressure is up at 20 or 21 and as soon as those tonsils were out my machine was set to auto and didn't go over 14 and kept dropping until it's where it is now.

To be honest I was scared as hell about geting my tonsils out at 44 years of age but I was ten times more scared having the UPPP done because of all the horror stories I had. It wasn't anything like I had thought it would be. Yes I was sore but I was sent home with Tylenol 3 liquid to take. Unfortunately I know now I am allergic to it. I had no other choice so when I got real itchy I took benedryl on docs orders. I do have a high pain tollerence which probably helped. After a few days I went food nuts and had my wife get two buckets of Kentucky friend chicked popcorn chicken. It tasted good but made my throat bleed. Don't eat anything the doc says not too. I got he bleeding stopped with a mouthwash she gave me that is supposed to help stop bleeding.

Best of luck and keep us updated.

Gerry

[Wulfman]

Here's a link to a search of "UPPP" posts/threads over the last 5 years. As you'll see, it's been discussed alot.

viewtopic/t47941/search.php?keywords=UPPP

The vast majority of those who have had it done DON'T recommend it. For many, Bi-Level therapy becomes necessary at even higher pressures than on regular CPAP.

It's definitely NOT something I would consider having done.


Den

[Gerryk]

Seattle, my case was nor a normal case because I have had big tonsils for a while. I had extremely huge tonsils. Imagine two golfballs in the back of your throat and that's what i had.

I agree you should look into this more, follow the links that Wulfman posted. Success in surgery is not common for people who don't have uncommon problems. if you ask people who had it and were not successful they had normal to slightly large tonsils not huge ones like mine. A guy I worked with asked me what he would have to do to talk me out of this surgery. He had it over 20 years ago and is on cpap now.

Gerry

[Muse-Inc]

If it were me, I'd give CPAP a serious trial before considering surgery...many report they struggle with needed CPAP therapy because of the surgery. If the doc says you'll still need CPAP therapy, why not start there in the first place?

We can help make transition to successful CPAP therapy go a bit faster because many of us faced challenges to getting the therapy going well, sometimes huge obstacles. Do you have a data-reporting machine? Does your machine offere exhalation relief? Do you have a comfortable mask? Did you ever get leaks under control? What AHI, AI, and HI were reported in youf sleep study and what were you getting using your machine? Were their any other complicating issues reported in your sleep study? And, most importantly, why did you abandon CPAP therapy?

Oh, I have pretty severe claustrophobia and I now wear a full face mask, the RespCare Hybrid, check it out, it's a comfortable mask and quite a few of us wear it. It covers the mouth, has nasal pillows, does not cover the nose, and it does not touch the forehead.

PS Welcome aboard! Great info and folks here!