Joined: Feb 2012
Machine: PR System One REMstar Auto (DS560)
Mask Type: Nasal pillows
Mask Make & Model: ResMed Mirage Swift II
CPAP Pressure: 12.5 - 18.5 cmH20 (auto range)
CPAP Software: SleepyHead
Other Comments: Have diabetes Type II
Location: Illinois, USA
RE: Trying to get UPPP surgery - Dr. denies me
ConnCarl Wrote:Shanes, the most interesting thing about your post, to me, is that if Apnea Board had existed twelve years ago, I might have written the same thing, pretty much word for word.
Nobody likes dealing with XPAP. Take me, for example. Ask around and you will discover that I am not exactly the XPAP Poster Boy. But even I will admit that XPAP is usually a better option than surgery.
I had my first polysomnogram back in 1993. When they showed me the CPAP machine I spluttered, "No way am I using that!" I insisted on UVPPP, which I now realize was one of the biggest mistakes of my life.
UVPPP rarely "cures" OSA, but it carries enough baggage for a trip to the Australian outback. For example;
Don't plan on taking a casual dive in the pool. The water pouring in though your nose would drown you in pretty short order. And nose clips won't stem the flow. Vise Grips might.
If you eat in a trendy restaurant, chew your food in small quantities and swallow carefully, otherwise your dining companion may be treated to the spectacle of a piece of vermicelli (the pasta, not the worm) falling out of your nose and onto the table with an embarassing splat.
If you finally throw in the towel and go on XPAP after UVPPP, you can forget about using one of those comfortable, unobtrusive nasal pillow interfaces. In fact, forget about a nasal mask of any kind. You'll almost certainly need a full-face mask, with all the flaws common to those designs.
But if you're like me, you won't just give up after UVPPP...and you can always find a surgeon to oblige you. You can get hyoid myotomy and genioglossus advancement next.
First, they break the little bone that holds your tongue down. Then they grab it with a pair of needle-nose pliers and wind it (like spaghetti onto a fork) to pull your tongue down so it won't fall back and block your airway. Of course, pulling it down also means pulling it forward, so your tongue will be sticking out a bit further than before. For me, this means biting my tongue violently every time I sneeze. Then they sort of shave your tongue down with with a polished stainless steel device that looks suspiciously like a wood planer. I never could have imagined that there were so many nerve endings in my tongue, but in retrospect, I suppose I should have seen that coming. I remember thinking afterward that if I only had a cyanide capsule, I could have just bitten down on it.
But wait, there's more! The next step in the Stanford Protocol for the Surgical Correction of Obstructive Sleep Apnea is Maxillo-Mandibular Advancement, or MMA for short. I'll spare you all the gory details and just share this much; when they're cutting your upper jaw away from the rest of your skull with a sawzall, you'll probably be thinking, "That tongue-shaving experience was like a walk in the park, relatively speaking."
Unless your pressure requirements are abnormally high...say 25 cm or so...or there is some structural abnormality that makes you an excellent candidate for surgery, I would strongly suggest that you give XPAP a long, hard look.
People are amazingly resilient. You would be surprised what you can get used to. I'm not saying it will be easy initially, but almost anyone can use XPAP. The trick is to address the specific problems that are making you uncomfortable. If you find the pressure too high to exhale against, a BiPAP machine can reduce the pressure on exhalation. If you find your mask uncomfortable, there are many alternative interfaces to choose from. If drying is a problem, a heated humidifier should help.
You're in the right place, at least. Please feel free to keep asking questions, and if you're going to insist on surgery, make sure your surgeon reviews all the possible side effects and complications with you, including any impact the procedure under consideration could have on your future use of XPAP therapy.
Good luck! Carl