Posted by Padraich4444 on December 07, 2001 at 19:14:35:

Please don't ever give up hope. The answer is out there. I've told myself I was going to come back to the net and post this, and I'm finally getting around to it. My first request is that ANYONE who finds success, PLEASE return to this forum and POST your story!!!

One thing people sometimes fail to notice is that these forums are biased towards the bad news. When people find an answer they resume their life, and there's no reason to be here. The only people that come here are the refractory cases so the most part. So DON'T GET BUMMED if you read about a lot of failures. It would be great if sandman were able to pull out some success stories and put them into their own thread, because people need to hear that there is an answer!!
I had surgery in April and it worked. I went through a two year nightmare of everything you can think of: the medical-insurance-industrial-complex, all sorts of mouth devices, face masks, nose masks, various contraptions to keep my mouth closed. The only way I was able to keep my mouth shut was with DUCT TAPE! Yes, you read that right. While I was on CPAP I first taped my mouth shut with duct tape. I always wondered when I had to go downstairs at night to use the bathroom if ever the curtains weren't drawn and the neighbors could look in and see somebody prowling around my house with duct tape. Either they would think I've been taken hostage or something kinky was goin on. I used wet suit material to go across my mouth, band-aids, I even started looking around for something edible that would glue my mouth shut.

I did eventually find some EXTRAORDINARY HELP. There is the potential for recidivism, but, my oxygen saturation levels were normal immediately after the surgery according to my doctor. I went to the Swedish Sleep Medicine Institute on Capitol Hill in Seattle. They were wonderful. It's a huge practice, and you get swept in and out pretty fast, so you have to have your list of questions when you sit down in front of the doctor, but, they are very very good, and with their help we kept plugging away.

They recommended I see a Dr. Horchiver who makes mouth devices. Even though the devices he custom made for me did not work in my particular case, cannot say enough about this man and his wife Robin. Apparently about 20 years ago he was a dentist and he started treating people with migraines that were perhaps caused by temporal-mandibular-joint problems. He used relaxing techniques, especiall electrical TENS machine: ?trans-electro-neural-stimulation? to relax clients jaw muscles. His client's migraines improved, but they also reported that they felt very alert. So he started thinking, and investigating and he came to believe that the relaxation was opening the airway. So when he sees a client, he uses TENS to relax their jaw before he takes the mold for mouth-pieces. He did all sorts of stuff because he just said he likes to experiment. I was one of those clients where nothing was working and he and I just got to the point of, well, lets try this... Anyway, people can't usually jump from diagnosist direct to surgery. I went through all the intermediate steps, and I was down to my last 2 bullets: throat surgery versus trach. and I was very spooked to say the least, but I'm glad I tried the less invasive stuff earlier.

The Swedish Sleep Institute in Seattle gave me surgical referrals to a Dr. Moore to roter router out my nose, which helped some, then to a Doctor Jonathan Chinn for the UPPP with genioglossus advancement.

It worked. And it was NOT painful. If it's as painful to some people, then they're not giving them the drugs. I was on a morphine pump which gave me a hit every 10 minutes and I was pushing that thing every 5 minutes JUST TO BE SURE. It was painful when I woke, because I was undermedicated until I regained consciousness, but as soon as I started whining, they hooked up the morphine, and within 2 hours I WAS HAVING A GOOD TIME!! And I only stayed in the hospital 1.5 days. I was eating ice cream within 24 hours. When I was discharged I went to IVARS and ordered fish and chips along with clam chowder. I brought it home and (this sounds gross, but it tasted so GOOD) put it all in the osterizer, french fries, fish, clam chowder. It tasted just like chowder, only fishier and more potatoier (I realize that is not a word). I don't want to give false hope. I fell into the highest probability of success group: RDI index, body weight, age factors etc., but it worked.

I could not stay awake at all. I lost a very high paying job, which I can't go back to because it involves shift work and I personally don't believe that if you have had this ailment for a couple of decades, which my doctor says is probable, and you've worked all those years in shift work, you've done some damage to your ability to sleep normally, so I have to protect that part of my health and practice the best sleep hygiene possible.

Just a note on the sleep hygiene: practice it religiously! I sometimes don't and I wake up exactly like I used to before my surgery. Lots of stuff get in the way of a good night's sleep, even without a sleep disorder, so, although I don't like to recommend that people be obsessive, be obsessive about your sleep hygiene (NO NIGHTTIME SNACKS (my worst habit)), and be obsessive about finding a fix, because there IS an answer. Do not give up hope. You will get through this. If you have a crappy doctor, there are good doctors out there. If you are losing control, ask your spouse or most understanding friend for help. It's hard to ask for help, but I was so depressed from no sleep, I wasn't able to successfully manage my care. I got help doing it. And if you're 1/10th as angry as I was, find a way to let it out. It's normal to be frustrated when something this hobbling and difficult to manage hits you. Take good care of yourselves. Go to bed on time. No late night snacks, blah, blah blah. And fire your doctor if he's a jerk. Make getting better your first priority.

I went back to school sucessfully for the first time in 20 years. I tried several times before, but there was no joy, something was missing because I just loved to learn. That love is back. I got straight A's for the first time in my life, and, though it takes a lot of strong coffee, I can sit in my chair and study until my BUTT is sore now, which is a long time. I've pulled 16 hour study days with only a couple of meal breaks, and didn't nod off. My sleep study is normal (my original RDI was mid-twenties).

Keep the faith. If you're reading this, as I was reading these posts during the last two years, you might be sitting at your computer feeling like your life is over, and that you'll never solve this, but you will. It's okay if you feel bitter, resentful and angry. In your condition it is as normal to feel that as it is to get hungry when you haven't eaten. Just don't give up. And if you are down to your own last two bullets, though I did not have to go as far as a tracheotomy, and I was devastatingly afraid every time I pondered the potential for that happening, my improvement from the surgery told me all I needed to know. Even a trach would be worth sleeping normally again.

If you are having emotional difficulties find a good therapist and get into a support group. If you're ashamed of doing such a thing, there is no reason to be. Our mind is part of our body. The brain is an organ just as is the heart and pancreas, and when it doesn't get what it needs, all sorts of stuff begins happening, and emotions start fluctuating like they never have before, so don't blame yourself, nobody is to blame. If you're like me, this may have really isolated you. Being in a group, whether a sleep apnea support group or just a general therapy group, especially if its a good one, is really helpful.

Take care everybody. Thank all of you so much. Thank-you Sandman, whoever you are, thank-you.

One more thing. You know, if you've had this for a long time it changes your personality. All of a sudden you're awake, but you have the personality of a tired person, so everything seems new. I even still have it in my mind that I don't want to do stuff because it's just the habits I fell into for lack of energy, but the energy and focus is there now. I just wanted to let you know that. When you do solve it, you'll still have hurdles, and having a chronic sleep probelem for one or two or more decades might have created some habit, character or personality changes, and you will have to reckon with those. My life didn't come up all roses after surgery, but it is so very much better.

GOOD LUCK!!!
If anybody has questions I will keep checking back a little bit, but please don't expect an answer right away.

Follow Ups:

• Re: Don't Ever Give Up Hope!/ Whatever Works Breezy 04:41 12/08/01 (0)

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