Posted by billinvan on December 13, 2010 at 23:51:20:(Posted both here and in the Non-CPAP forum, since it makes use of both types of treatments.)
UPPP + BOT RF + lingual tonsillectomy + homemade jaw retainer + oropharyngeal airway tube + AutoPAP
That is the current course of treatments that I am on to treat my UARS (upper airway resistance syndrome). It's like sleep apnea with all the same problems, but without the measurable activities like cessation in breathing during sleep. Instead, throat tissue activity to open the airway for respiration during sleep diminishes sleep quality and causes the same sleep deprived symptoms as OSAS.
The UPPP was of no help, since the problem is the result of a very thick tongue that completely blocked the throat, and the BOT radiofrequency may have brought some small relief over several treatments, though my tongue is far too big to have an adequate effect. The lingual tonsillectomy was a big help in my treatment course, since it removed a big chunk of obstructive tissue further down the throat, but still did not solve the bulging tongue tissue that continued to squeeze into the throat. Its combined use with a homemade jaw retaining oral appliance constructed of two athletic mouth guards held apart with thermal glue and a plastic oropharyngeal airway tube inserted into the throat through the mouth almost provided an unobstructed airway, though still fell short by about a centimeter.
Then just earlier this year, after making numerous more visits to my physicians, I managed to arrange a trial use of an AutoPAP (auto pressure adjusting CPAP) machine, which I now use together with my oral devices. After trying it out at different pressures and other settings, they've combined to form the most effective course of treatment that I've ever been on. For the first time in my life, I can get a night's sleep and feel rested enough to go to work everyday for half a year straight, and I no longer need antidepression meds to keep my mood bearable and not fall into depression and mental breakdown.
It's really too bad that I had to do most of the investigating and experimenting on my own to get this treatment, since UARS is so poorly understood, misdiagnosed, and little treatment options are available for it, and I had to finally come upon it at almost 40, while my life wasted away. It is also equally unfortunate that even upon discovering this treatment, doctors take so little interest in learning about something that helps such a rare and unusual medical problem, such as this, let alone take the time to write about it and pass the knowledge onto potential researchers. I figure they could learn something for it, whether to develop treatments for freaks with unusual conditions like myself or other more common SDB's.
One of these days, I should make a web page describing my story and treatment in more detail, though I'm not too sure it'll be of much use to anyone or if they'll be interested.
Bill
- Re: My combination treatment for UARS kettlebell 12:45 2/23/11 (0)