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11-05-2007, 08:16 PM | #1 | ||
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I was diagnosed with obstructive sleep apnea a few years back. I just couldn't adjust to the bipap. This year I went to a better sleep disorders center and they diagnosed central sleep apnea as well as the obstructive sleep apnea. I was wondering who else has these disorders and how they deal with it. We are now in the process of trying to decide where to move and I hoped to find out where the best treatment was for these disorders in the SW or NW regions of the USA. Maybe someone has some experience with different sleep centers as some are better than others.
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11-14-2007, 09:01 PM | #2 | ||
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Junior Member
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I also have central sleep apnea along with the obstructive type. I have a brain malformation called "Arnold Chiari Type 2" and have had surgery to help correct some of the problems that the ACM has created. They believe that my central apnea is related to that issue.
I though, LOVE my bi-pap machine. I have had it for about a year and 1/2 and use the nasel pillow mask. It did take me awhile to get used to it but I sleep much better than I ever have. I live in the NE and my nueroligist handles my sleep issue along with the ACM. |
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01-15-2008, 05:23 AM | #3 | ||
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My apologies in advance, this forum throws me a little with the format. I am not used to having the question in my feedback area, so I hope I am not making a mess.
I have severe, life threatening Central/Complex sleep Apnea, Mixed Sleep Apnea, Cheyne-Stokes Respiration, PVCs and halitosis. I sleep with the Respironics BiPap Auto SV machine. It is great. Keeps me alive. Right now, it is 2:20am and I am awake. Restless Legs Syndrome. So frustrating. I took oxycodone, that is what they told me to take for it. And I use Neurontin daily. I am a mess (that is what my latest doctor said...I laughed and told him "Thanks, I love you too" and he cracked up laughing. But he is right. I am on Morphine for pain, and the darned RLS just came back. I am soooooooooooooooooooo frustrated. I use a smart card with my SV and it is amazing to see how well this machine works to keep me alive. My most serious illness is a brain malfunction. If I quit breathing I will probably die. My system does not recognize that I have quit breathing. Long story, but I went back to the National Jewish Hospital in Denver, CO last summer. My week of testing lasted almost 6 weeks. I learned more about my Respiratory system than I wanted to know. I used the Respironics BiPap Auto before the SV. It is so new, none of the DMEs in our area know how to set it up and put the settings in it. I am on the CPAPtalk forum. My memory is shot. I hope that is the name of it. Only two people in the world are on that forum, I thought maybe someone here is one it. Guess I will start a thread too see. Good luck with your Centrals ---- my SV handles them fine. Quote:
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01-16-2008, 01:22 AM | #4 | ||
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Junior Member
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my husband had severe apnea and couldn't stand the machines, so over a two year period he got every surgery from the co-founder of the Stanford (first) sleep center.
He got his lower jaw broken in the front with a little square of bone sawed out - the one with the tendon to the tongue - so they could rotate it once and put it back in, which tightened up the tendon and brought the tongue forward, for an additional few millimenter of space for breathing. He got both jaws broken in 4 places halfway down the jaw, with implants, so that the whole jaw (mostly the lower) could be moved forwardro create a bit more breathing space. His bite was so well preserved, that he didn't even have to wear braces! He got uvalectomy, tonsilectomy (terrible to watch him in the ICU feeling like he couldn't breathe) that helped a little. I'm sure there were ,pre sirgeroes. bit can't remember them all. After a couple of years he got tested again for apnea. What a disappointment to find out he still has it. He just has too big a natural fat pad the back of his throat (has nothing to do with one's weight. So, he got a machine and it's like a different animal from before. So quiet, so much less uncomfortable. Make sure you see what's out there before assuming it will be as bad as before. Good luck
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1994 broke neck lifting dad - misdiagnosed 4 yrs by HMO as carpal tunnel and malingerer (!) Lamination with titanium 97 - full Central Sensitization by 2000. Now get meninges inflammatory attacks that cause venous occusions leaving me concussed or writhing without enough time to recuperate. Can't wait for Clifford Woolfe's selective painkiller for only nerves in pain. Now on Methadone, bacofen, etc. usual effects |
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01-25-2008, 06:02 AM | #5 | |||
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Junior Member
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Anyway, the Presbyterian Sleep Disorders Center is considered one of the best in the area..it's in Albuquerque. Good luck!
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Be careful what you wish for, you might get it. . Chronic pain since 1999 Oh, too many things to list! |
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