Hello All, new to the board. Found it on a yahoo search for sleep-apnea forums.

Anyhow I am 34, a male and approx. 340 lbs with a short thick neck and etc. Have actually been diagnosed since '04 (if my memory serves me correctly, yeah right) w/ Severe Obstructive S/A. When I took my initial sleep study I had problems with the cpap, I could not breath (I liken it to sticking my head out the car window going 50 and turning my face into the wind). Therefore I (not knowing the seriousness of it all) pretty much refused to continue with the cpap machine and finished the night with the little hose with the 2 nostril tubes that a lot of people on oxygen use(no seal obviously = no help).

I didn't go back believing I would get better if I worked on my diet and exercise. I didn't get better and my diet and exercise didn't either (just too tired/lazy/poor attitude). About a year ago I decided to go back because I had heard about NFL player Reggie White dying in his sleep due to complications with s/a. I went to my initial consultation and tried to discuss with the Dr. my uncomfortableness with the cpap machine and what could be done about that issue. Well he is a bit of a hardnose type and basically gave me the 'old "well you haven't got any choice but too deal with it". Well after that I felt like they could not help me, and didn't care. Because I am clausterphobic and I hyper-ventilate with that air blowing through me and I don't feel like I can overcome that.

So I looked into the surgery (after more research to find out for myself that it was a possibility), to remove the tonsils and uvula. My ENT felt it was neccessary because I have a narrow throat area and oversized tonsils/uvula/tongue. My insurance company denied my app for the surgery due to having no evidence of inability to use the cpap (I have no idea how they don't have this info) and no documentation of further worsening s/a. So I have now re-scheduled another consult with the sleep lab and to set up another sleep study. That consult is on the 15th of May hopefully we get that sleep study set up quickly.

Apparently I stop breathing approx. 70 times an hour based on results from my original sleep study. Over the past several months I have gotten much worse in alot of ways. My short term memory is atrocious (someone please assure me this can be reversed), and my memory was always so sharp. My concentration is worse, tired more often, wake up occ. choking on a little saliva, headaches and of course the awful flem in the morning that feels like it's choking me in a semi-subtle way.

One reason I am writing now is I have been feeling somewhat scared that I will croak before I can get proper help. I have even slept upright in my chair on a few occassions because my fear got too me just a bit. I wonder if there is anything anyone has learned that would help me in the short term until I can get squared away. And any info at all that will help my current situation, especially with trying to find a way to deal with the cpap machine it is the root of much my misery as it just does not seem to be something I can overcome. BTW I also did have the sleep lab try just a nose cover of some sort and it helped a tiny bit but not enough for me to deal with it.

Any help would be appreciated, now time to get to sleep. Talk to you all very soon, and I am looking forward to your response(s).

Welcome to Apnea Board, willjay.

I'll give you the short version: Forget surgery. Work hard on getting CPAP to work for you.

If you like, you can hear more about my experience with surgery here.

But the bottom line is that CPAP technology has advanced dramatically over the past five to ten years. You may have to work at it, trying different masks and machines, but I'd be very surprised if you couldn't find a setup that works for you. And I'm sure that once you start getting restful sleep, you'll wonder why you didn't make more of an effort with CPAP from the beginning.

Good luck whatever you decide to do, and if you have any questions, we're here to help.

Carl

Thanks Carl,

I appreciate the info. I will be looking at this whole thing a bit more informed now that I have this board. God Bless everyone for sharing, and they say the Internet is a bad thing.


BTW ,

Does anyone have any idea what kind of abnormality would make me an excellent candidate? Like I said before I do have what is considered to be very large tonsils/uvula/tongue, I don't know if that qualifies me or not. I don't know my what pressure req are just yet, but I seem to be an extreme case. I mean they had that mask jacked up if you ask me. But I will know more very soon, thanks again.

Hi Willjay, Your experiences sound like mine with the machines. I hope that you can find a way to use one, I am trying too. I fall asleep somewhat well, but wake up gasping and feeling what you describe. I am new to the machine and hope it will work out eventually, as I hope it will for you too. Thanks for posting your experience, since I don't feel so singled out or like I am the only one trying to deal with this.

Just adding something to think about. There are many types of machines out there today. You can get ones that give you relief with you're breathing out. There are APAP machines (as opposed to CPAP) that change the pressure as you breath, depending on what the machine senses you need. (A range of pressure is set by your doctor and the machine changes the pressure when needed within that range.) There are other types of machines as well that I am not as familiar with. The point to all this is that please, please continue working at xPAP. If you're having a lot of problems with high pressure, ask about an APAP machine and see if that might help. If you haven't tried a machine that gives you a little relief on exhale, please ask about that. (On my machine, that relief is called C-Flex.) Also, some masks feel better at higher pressures than others.

I've heard certain surgeries for obstructive sleep apnea (OSA) are very painful and only give partial relief for those that have severe apnea. And somethines that relief doesn't last. If you decide to go this route, please research is fully.

Please post on how you're doing.