lvtech, you won't get negativity from me because I am right with you. PAP isn't the answer for everyone and shouldn't be considered as such. Everyone is different and treatment should be as individualized as possible to make sure treatment is effective.
I haven't had any surgery yet but here is what I can offer about what I have learned as I head down that path. .
1. Get your full sleep study results and know them inside and out. If you don't understand something, ask your doc or sleep lab tech until you do. Question everything - know the breadth and depth of what the results say. You are about to potentially embark on some pretty difficult surgeries so you must be 100% sure what your doc is telling you is correct. Don't assume it is. Sleep is an emerging science and is far from perfect. A PSG is not a perfect measure – it is a single night of atypical data scored by an imperfect human. Make sure as best you can that you really have what they say you do and it is as severe as they say it is. Get a second opinion if need be. Understand their scoring definitions, especially around hypopneas. There are several to choose from and whichever one they choose could make the difference between a positive or negative diagnosis and/or the severity. Don’t expect your doc to be all that interested in talking with you in detail. Much easier to get the results from the lab and write a PAP script. You are going to have to advocate for yourself.
2. Visit with an ENT who specializes in sleep. Get a referral from your doc or call around to find someone who deals with sleep issues. If you can find someone who has trained at one of the big sleep centers, even better. If you can’t find anyone through that channel, it might be worth an email to one of the big guys like Steven Park or Kasey Li and ask if they know of anyone in your area – this world is still small enough that they might. They sound like very helpful doctors. Get the full ENT evaluation including an endoscopy. They suck but they can tell you a few things about what might be causing your apnea. Apnea is a disorder that could include one or more points along the airway. I almost always hear people talk about it being the airway collapsing, but it could very well include the nasal cavity as well (deviated septum, turbinates, etc). The ENT will likely give you options for treatment. In my case, I had none of the specific anatomical issues you normally see in apnea (fat neck, large tongue, enlarged tonsils, etc) and the ENT suggested getting my deviated septum fixed, chronic allergies addressed, and moving to an oral appliance. He feels this should effectively treat my specific twist on the disorder. Far cry from the doc who spent a few minutes with me and wrote a script for a PAP machine.
3. Take the information from the ENT visit, couple it with your thorough knowledge of your own sleep study results and start putting the pieces together. Hit pubmed and read about the research studies around whatever suggestions your doc made. There should be plenty of information on whatever path you are considering.
4. As far as forums, you are in the wrong place for surgery. If you want people with experience, go here >
http://www.sleepnet.com/apnea/apneainf.html . It isn’t super active, but has a lot of archived posts which will give you plenty of information. Remember that the internet amplifies negativity so proceed with caution. Like someone posted, most of the people who have had successful surgery don’t hang around forums. I will say that my ENT was very negative on UPPP surgery, which seems consistent with what is available on various message boards. It just seems to be a pretty ineffective treatment for most people. Just something to keep in mind.
5. If you decide to go with MMA surgery, check out
http://www.jawsurgeryblog.com/forums/. It is mostly people who had the surgery for non-apnea reasons, but there are a few sprinkled throughout. You can use the forum to understand what the surgery and recovery entail. There are some very good blogs from people who have had it for apnea which you can find by googling MMA sleep apnea blogs. There are probably 10 or more, most with lots and lots of information. My ENT told me he wouldn’t do it on me and suggested that the only place in the world he would have it done is Stanford. It is a serious surgery, to say the least. It does have an amazingly high cure rate however – cure as in you no longer have apnea.
6. If you want something cutting edge, you could contact these folks about a trial taking place right now >
http://www.sleepapneatrial.com/home.htm. I have been in contact with them and it sounds very interesting. I am keeping it in my back pocket for now, just in case.
Good luck.
