Posted by milron on January 30, 2010 at 16:50:05:Gremlin, I've read your post and you're the first person who described close to what I've felt every day for close to 30 years. I've posted lengthy messages about my condition, however know one ever said they felt what I was feeling, which is that constant feeling of collapse of the throat when you get relaxed, even while you are awake. Perhaps some feel this, but no doctor's been able to treat it. I always described this as apnea during the day and night. In 1999, I had UPPP/Septoplasty which healed the apnea for about a year, then failed. These surgeries where designed for sleep apnea, and not the collapsing of the throat problem (breathing problem I call it), the problem I was hoping it would solve indirectly, which it obliviously didn’t. None of the doctors I visited ever tried to tackle this breathing problem but one. They always seem to focus on the sleep apnea, but it was the breathing problem that came first. I'm very discouraged, as this has damaged my life gradually way more than I at first realized. Today, I am collecting disability from my job, in which I had to be fired first. Now I have to fight for Social Security. This is all because I don't have the appearance of the average sleep apnea patient, which is obese in general, however I've gotten way heavier over the years. I'm able to hide the weight problem because I'm tall and I lift weights. But the problem is like yours, a major deformity in the throat, which is unrelated to weight, except when you gain extra weight. On that note, in 2007 I was also diagnosed with severe macroglossia (very large tongue base), after I had already lost my job.
The ENT/Sleep doctor who diagnosed me with macroglossia recommended hyoid advancement for my sleep apnea. He never said it was for macroglossia. Again, no one wants to tackle this breathing problem. If they are, then they must be addressing it through the sleep apnea surgeries. By the way, after the surgeries failed in 1999, I was diagnosed with severe hypersomnia and border line narcolepsy as a result of an MSLT. I'm not sure if I had that condition way before the surgeries...probably so. So when I read your post about concentrating on air all day long, and the effects it has on the brain when it comes to your sleep, it seems to run right down my ally. However to my surprise, I've found it very, very hard to find a doctor who can put all this together and treat it. It's like none of them want to take full responsibility, or they just don't know how to treat it, or both. In a way, I've been my own doctor on this for the most part.
When I read your post that MMA failed, I and everyone else suffering from this condition felt devastated also. Then when I read your post describing your symptoms of constantly concentrating on keeping your airway from collapsing, I felt even more devastated, because that has been my primary complaint for going on 30 years. I really didn't expect to make it this far. Perhaps the UPPP/Septoplasty made me breath a little better than I thought, and enough to prevent me from having that heart attack the doctor told me I was going to have if I didn't have the surgery...perhaps he was right. Like you, CPAP didn't do enough for my extreme daytime drowsiness, regardless of whether or not I was tolerating it. Why that's so hard for the disability adjudicators and these recent doctors to understand is beyond me.
My only options are the hyoid advancement the ENT doctor recommended, the MMA, and the trache. But again, when I hear that the MMA failed you, plus the fact that you have that same throat collapsing problem I have, it makes me feel even wearier of the MMA. I always felt I was by myself with the throat collapsing problem, which made me feel like most sleep apnea surgeries would probably fail me like the UPPP/Septoplasty did, even though the multiple surgeries may work better for a sleep apnea patient without the constant feeling of the airway collapsing.
Are you on disability? On that note, I sometimes feel I'm in a catch 22 situation. If I have a another surgery that cures the sleep apnea, but doesn't take care of the constant throat collapsing problem, that would only disqualify me from disability, because the apnea would be cured, which will probably be short-termed. However I would still have the breathing problem (which is disabling by itself), and/or I'll still have the extreme daytime drowsiness. Losing the disability would be devastating during the worst economic crisis since the great depression, and still have disabling symptoms. Before I won my disability case, I was in that situation. I learned that this system don't care anything about you if you don't know how to use the rights given to you...sometimes they'll even take those away if you don't have a good lawyer. They only go by how well you present your case, not how sick they think or know you really are. The ones who determined my disability case go by some type of template that will disqualify almost everybody if you don't know the law to the extreme. My disability lawyer only fought to get me disabled based on sleep apnea, and not the severe hypersomnia. I'll probably have to get the severe hypersomnia diagnoses to work in my favor to keep the disability or to get the Social Security or I may not, that all depends. In your last post you mentioned that you found a way to get better sleep, but it messed up your bite. Was it worth it. It doesn't sound like that took care of the constant collapsing of your throat when you're not concentrating on keeping it open. If you don't mind, could you tell me how this has affected your job situation? By the way, did you have the airway collapse problem first, then get diagnosed with sleep apnea? Do you think the surgery failed because of the doctor or because or your rare condition of the constant airway collapse? Also please keep me posted on any new treatments you run across.
Thanks and Good Luck,
Milron
- Re: Gremlin or anyone else similar Gremlin 00:41 2/08/10 (3)
- Re: Gremlin or anyone else similar Gremlin 00:52 2/08/10 (2)
- Re: Gremlin or anyone else similar Gremlin 01:14 2/08/10 (1)
- Re: Gremlin or anyone else similar milron 13:32 2/08/10 (0)