Trying to get UPPP surgery - Dr. denies me

[SuperSleeper]

[parts of this thread were copied from the old forum]

Hi all, I am new to this board and sleep apnea. I was diagnosed last October during a sleep study after witnessed apneas. Around January I got my cpap machine and could not deal with it and put aside. In april I complained about a sinus infection and got a CAT scan done and it revealed I had a deviated septum and large polups in my nasal tract. Had the surgery done in May and I noticed major improvement in my sleep and breathing. I mentioned something about UPPP and the dr sys it usually wont work and CPAP is my only option. Keep in mind I cannot get a good nites sleep with the thing and I feel that this other surgery would help.

Last night my girlfriend woke me up when I stopped breathing and my heart was racing fast. Time to do something. I tried to get some sleep with the cpap.

My question is, can the Dr give the UPPP surgery a shot if I am not CPAP compliant. Would that be a good case for insurance reasons. I feel like I should exhaust all other options because this CPAP just sucks I mean it "blows" lol

[SuperSleeper]

shanes, give us a bit more detail about the cpap problems you're having.
what kind of machine and mask?
are you using a humidifier?
why do you think you're having problems, when you said you "can't deal with it"?
what's your pressure setting?
how long did you try CPAP?

[SuperSleeper]

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

[SuperSleeper]

Shanes, You say you want UPPP surgery. You"re only kidding right. Who would want to let someone use a roter-rooter to clean out their throat. I thought I was making a good decision, but my throat, nasal area, & sinuses have not known a moments peace since I made the decision for UPPP Surgery.

Did you know the Uvula is there for a specific reason. It contains muscles that stiffen and expand when your food is trying to go down the wrong way and choke you. I miss my Uvula, not only does my throat feel funny without it, I have frequent bouts of choking. Three times I had had to have the Heimlick Maneuver administered by strangers in restaurants to keep me from strangling on a piece of food, lodged in my throat.

The doctor who did my surgery really cleaned out my throat. The Uvula was cut out, then he scraped that area and my palate to the bone. He trimmed all the side flesh and tissue from my throat. Not only did he not cure my sleep apnea as he promised. He left me with all the problems that Carl listed. In addition, my speaking voice is hoarse and my vocal cords are easily irritated and I lose my speaking voice while my vocal cords heal.

I mentioned that the surgery did not cure my apnea. In honesty, it did reduce the number of apneas, but they are still there. Only now, Cpap rarely works after your throat has been reamed out. And, you are left with the results of untreated apneas & hypopneas. Your throat is so wide after surgery, that the Cpap air goes in your nose, and no way can it have sufficient volumn to fill your cavity of of throat - so it puffs out your cheeks, then out your mouth.

Carl, you were right about food coming out of your nose. In addition to that, pieces of chicken, turkey and most stringy vegetables easily get caught somewhere in the nasal passages. You can feel they are there, but there isn't anything you can do to get them to expel themselves -- that is until they become infected. At that point an ENT can use one of his projectile instruments and get most of the infected food out.

I can't speak for Carl, but my nose has "run" constantly since my surgery. It is another of the little bonuses that come with UPPP surgery.

Have I mentioned the pain the follows the surgery? If not, you are in for a rare experience. My dr did the surgery out-patient. I was barely semi-conscious when I was released from the surgery center. The nurse told my husband I would have to sleep sitting up until my throat healed, the blood & fluids running down my throat would choke me if I would lie down. Of course, they gave me pain pills, not to stop the pain, but to dull it enough so that I was in a stuper. My husband had to tie me into a recliner to sleep. I was too out of it to sit up, and he could not stay awake all night, night after night, until I was awake enough to hold myself up.

If I could come to your house and beg you not to have this cruel, useless surgery I would. But you probably have made your mind up. Hopefully, your insurance company will continue to refuse to pay for the surgery, because you have not made a good-faith effort on CPAP.

If you were to review all the people who had had this surgery, most of them would tell you - on the basis of the pain along - that it was a horrible surgery and took a long time to recover. All the people who post about it, do not tell about their successes, they tell about the problems that developed after the surgery.

Cpap isn't easy at first - but it does work, it you give it a chance. Jan

[SuperSleeper]

I think that you should resolutely try to use CPAP or perhaps BiPap and t have a heated humidifier equipped system. For what it may be worth, I am currently using the Res-Med Activa mask and a built-in humidifier in my BiPap machine and sleep very well indeed. I don't like the bother, but the results are well worth the extra effort. I have been much more satisfied sincemy new doctor (a pulmonologist) added the heated humidifier. I still remember the commen of my first apnea doctor years ago who said that he felt that surgery was hardly ever advisable, and that was way back before we had the excellent machines now on the market.Good luck

[SuperSleeper]

At first I thought I might consider surgery too. After I saw an ENT specialist, he advised me that my oral anatomy did not appear to be a candidate for surgery. He also indicated that OSA is rarely cured with surgery. I asked him about the recovery and was told that it's a painful process.

I don't think I would go for surgery even if there were a chance that it would enable me to sleep comfortably without a CPAP.

Another thought that comes to my mind is that it will change acoustics too. I wonder if it would affect your speech.

[SuperSleeper]

I realize this is an old thread. Thanks for moving it back up in the queue.

I was one of those thoroughly examined by an ENT who said I did not need surgery. I have been having ongoing trouble getting my AHI into the acceptable range the whole time I have been on CPAP. My Doctors and I have finally concluded it is because of the many meds I take, some of which probably alter my sleep architexture. I haven't heard from anyone cured by surgery, though I have read of improvements in the use of CPAP. I have also read the opposite. I guess the main thing is to find a doctor you really trust. The horror stories are pretty scary.

[SuperSleeper]

I'm hoping this thread is still active. I'd been on CPAP for about two years (Remstar something or other) with humidifier. I have mild sleep apnea, but several severe episodes of daytime sleepiness (to where I wake myself up snoring at my desk at work, or if I'm sitting still for a short period of time, I fall asleep). I have very large tonsils, and both my ENT as well as my sleep specialist say that when I am asleep/relaxed my tonsils, tongue, and uvula close off the entire airway. Frequently my husband has to push me violently awake to get me to start breathing again, and I'm non compliant with my CPAP.

Having said all of that, I'm scheduled for a UPPP on July 1. I'm pretty terrified out of my gourd, because hospitals are just frightening to me... I've also read many horror stories on the internet about UPPP side effects. However, I've also read some good... Are there many folks on this board with *good* experiences? I'm looking for some encouragement here...

I'm desparate to sleep. The sleep specialist is at a loss, I'm at a loss... and the docs both say that this is my best option. Any words of advice or encouragement?

[SuperSleeper]

Having said all of that, I'm scheduled for a UPPP on July 1. I'm pretty terrified out of my gourd, because hospitals are just frightening to me... I've also read many horror stories on the internet about UPPP side effects. However, I've also read some good... Are there many folks on this board with *good* experiences? I'm looking for some encouragement here...

I'm desparate to sleep. The sleep specialist is at a loss, I'm at a loss... and the docs both say that this is my best option. Any words of advice or encouragement?

Sounds like you have pretty much already made up your mind to do the surgery - so this is NOT intended to try to talk you out of it.

Since you say you have already researched this on the internet, I assume you also saw the very low success rates of that & other such surgeries. Plus, a lot of those that "claim" to be successful are usually not 100% successful.

I would make sure that I got some figures as to the success rates of whoever is going to do your surgery.

You must be willing to go through all of those "horror side effects" you noted in the hopes that YOU will be one of those that can claim success.

"I" have never had that surgery, but I did look into it many years back with the thought that I could just get rid of the CPAP hassle. I decided it was not worth the risk, but I also did not have the specific problems that you do.

[SuperSleeper]

Greeting duckydoom :
Reading through this thread i would be discouraged from considering this surgery but it is your choice , firstly i would look into upgrading to one of the newer data capable machine as they have more comfort features and friendlier in making complying with cpap much easier than the older machines .