I said I'd never post here again and I guess I lied. I will in the future put up a link to a site documenting my mma surgery for my severe sleep apnea for those interested. In about 4-6 weeks depending on when insurance goes through I have surgery at Stanford. That will actually be my last post here.

"Taking the hose out of Hosehead" Sturmer

I had an MMA over 13 years ago and if I had known then what I know now I wouldn't have had it -- it was a totally worthless and barbaric surgery.  Ask your surgeon about mandibular nerve damage; my lips and part of my mouth are permanently numb.  

Ask your surgeon what the chances of success are, he shouldn't say any more than about 50% -- and remember that a successful procedure is defined as a 50% reduction of AHI.

Thanks for the info Bearded One.

Would you mind telling me the name of the surgeon and where you had it done? That is a while back but I do want to make sure Im not using the same folks!

 I find in my online research of peoples MMA blogs, talking to patients and reading medical studies, that people with severe sleep apnea tend to consider themselves "cured" afterwards, when before they were nonfunctional.  Talking to them the numbness is bothersome, bite problems, pain, etc etc. BUT nothing compared to what they suffered with before.

I will ask your questions though thank you.

My surgeon is in Georgia.  The surgery was done properly, it just didn't do any good.  The surgery is quite invasive and has a long and inconvenient recovery time.  Although it is quite useful for people who have severe problems with their bite, it is way overkill for sleep apnea -- even if it did work.

I am also considering doing the MMA surgery at Stanford and have researched and researched this topic.  Again Bearded One forgive me if you have answered this in earlier posts.  My airway (3mm),receded chin,large tongue ect ect. and being on the thin size (I could lose twenty) is why the surgeon recommended this surgery.  Did you have all these characterists and what made you lean to have the MMA.  Any input would be great.  The surgeon told me you're airway should be between 12-15mm.

THANKS

Scott

I don't remember what my airway size was, I know that it was considerably smaller than 12mm.  I had a hyoid suspension and MMA in one surgery and a UPPP a year later.   I haven't had any testing after the surgeries other than sleep studies and they have shown that I still have severe sleep apnea.  For all I know the surgeries were considered to be "successful" (50% reduction in AHI) even though I still have severe sleep apnea.

HI Bearded One,

If you dont mind can I ask you a couple of questions online or offline? Before your surgery did you have a receded chin? Small jaws? When you opened (or even now) your mouth does it look like your mouth is drowning in tongue? Were and are you now obese? I mean I am obese by the bmi calculation but in reality no one would say that if they saw me. I am 5"10 208 pounds.

I awake choking on my tongue. I have convulsions in the night from lack of oxygen etc. I looked at my airway through a fiber optic scope the other day and it from just a non medical observers point of view, crowded as heck. I could barely see my vocal chords for all obstructions.

I am 100% having the surgery. There are no upcoming treatments for severe OSA or UARS coming anytime soon. The one thing I give CPAP credit for in my case is that though I dont feel any better in the morning when I wear it (at 20cm/s!!!!) it makes it impossible for me to snore or have apneas or convulse. SO i guess in a way that is a treatment but I feel 40-60% everyday either way.

Best of luck to you and thank you for your honesty! Gotta consider the bad with the good for sure.

Before your surgery did you have a receded chin?  Small jaws?

No, I don't believe that I had a receding chin.  My jaws are not noticeably small; although when I was in my teens, a dentist extracted a tooth to prevent crowding.  I have very straight teeth and have always had a perfect bite.
 
When you opened (or even now) your mouth does it look like your mouth is drowning in tongue?

I don't believe that my tongue is large, and it was never mentioned as a factor.  

From viewing the x-rays with my sleep doctor, a maxiofacial surgeon, the entire problem is a small and collapsing airway,  No mention was made of any oral or skeletal issues.

Were and are you now obese?

I was 6'1" 200#, and very muscular.  I could lift and clear at least 220#.  My neck was about 17 1/2" and my pants waist was 32 - 34",  My shoulders and chest are very large.  I have gained weight since then, a particular problem is that I have developed fibromyalgia-like symptoms and I am no longer active.

thank you for the information. From your description I am build wise similar to you except I am a mini you and I was born with small jaws. The more I look at my face the more it is noticeable. I have a wide thick neck and a stout build and VERY small airway back by my tongue. I even have a small mouth and my tongue is drowning my mouth. You  cant even see my uvula if I open it! Also i have a receded jaw. Its noticeable in profile pics. I started my journey with unknowledgeable physicians, moved to incompetent "Sleep specialists" and finally the answers that were alluding me with Dr Guilliminot at Stanford. (of sleep medicine fame)

I believe there is a direct link between good OSA MMA candidates and physical build. What does this do for other sufferers? Well some of them do fine with CPAP and others do fine with UPPP. Such a simple problem (aireway collapse) but different for everyone. No one size fits all fix here. That is what really bothers me. Ive asked the top in their fields this question " Are there any upcoming surgeries or other treatments that will deprecate all they do today. Answer always is no.

Actually the first time I went to Stanford and showed my studies Dr Guilimeniot made a visit because I was obviously a special case.
CPAP not helping me, etc. When I first met him he asked me a lot of questions. Then opened my mouth and started doing measurements. Looking up my nose, etc. Talking in medical talk to a young apprentice assistant that actually I have never even seen on this board (there are apparently grades and levels of different deviated septum, tongue size to mouth or god knows what ) but after a ton of research I still havent seen anyone on any apnea board or anywhere else say the same kind of things). I could tell he was serious and I was damn serious myself. At that time he had me set WAY higher on CPAP than my older doctors. By the end he had me maxed out. 20cm/s and asked me to get Bipap 22/18. The high pressure was too much for me. The next time I specifically asked to see him and he spent a half hour with me doing a very thorough look at me and hearing my results, symptoms etc. With a heavy heart and a word of caution "make sure you get a good surgeon" he said he believed the only thing that could really help me was MMA jaw surgery. This coming from a CPAP pusher. He honestly believes CPAP is the best form of treatment and took me down that road, just like earlier doctors.

So to make a long story short, I have done tons of research reading EVERY blog and social networking site page I could find from people with OSA. Talking to people. We know this comes in different flavors and since everyones structure is different in some ways, that is why OSA, UARS, CSA are such beasts. The problem is simple but in many cases the causes are different enogh to require a lot of close medical scrutiny. Also I looked into those who had all the different surgeries. The people who were not obese but with builds like yours (and mine) but with small jaws and thick neck tend to be the ones I find having surgeries and benefitting from them. Particulary MMA. They are not obese, but they tend to have smaller or receded lower jaws. They tend to look better after surgery than before but this is not always the case.

Sorry Bearded One I kind of got off thinking aloud. You said your AHI was decreased by 50%? Did it make you feel better? Do you know how much they moved your jaws? What you tell me helps me on my personal journey. MMA does not help everyone. Ive spoken to a number of people who got traches because MMA did not work. Genereally they were a lot heavier with our similar builds. People with "curing" surgeries often relapse with large weight gains.
Its funny, I spend more time researching and reading about sleep apnea than ALL MY FAVORITE hobbies. It has truly got to the point of ruling me.

I didn't mean to say that I know that my AHI was decreased by 50%, I meant that if my AHI had been decreased by 50% I still have severe sleep apnea.  I have no idea what either surgery did to my AHI, I was too naive to ask and if I were told, it was so many years ago.  My jaw was moved forward by 12mm.

Thanks Bearded One for you're thoughts on MMA...MILLION DOLLAR QUESTION...I have been battling the machine since Sept 07 and have had UPPP ect and considering MMA...How long did it take you to be compliant with cpap?What pressure are you  on?  What mask do you have?  Did you have trouble keeping it on?  I have a similar build has you  do and want to be compliant with cpap, but its a battle every night.  I HAVE TO SAY I FEEL BETTER WHEN I CAN KEEP MASK ON, BUT NOT 100%....Thanks for you're honest  and helpful information.  

Scott

Scott sleep wrote:

...How long did it take you to be compliant with cpap?  What pressure are you  on?  What mask do you have?  Did you have trouble keeping it on?

I don't really remember how long it took, it wasn't a terribly long time; perhaps a couple of months.  I had no support but I was very motivated.  I was an emotional wreck by the time I started CPAP.  I remember going through the taking the mask off at night thing -- although I generally remember that I made a conscious decision to take it off.  After a year, I was 100% compliant and I hated CPAP, that is why I had the MMA surgery about a year after I started CPAP and a UPPP sometime later.  After a couple of years I made peace with the CPAP, now I am a CPAP machine collector :)

I started at 10 cmh2o and I am at 11 cmh2o right now.  I have been through a large number of masks; the headgear on my first mask made me look like I had a pair of womens' underwear over my head.  My second mask were nasal pillows, which were a disaster.  Right now I am using a ComfortGel mask which stays on very well with one problem that I have with all masks; the MMA messed up the structure below my nose and it keeps pushing the mask upward, against my nostrils.  A few days a week I wake up having to pull the mask downward.

sturmer,

That was a very interesting post. I am wondering if you would be willing to share some additional info. Do you know what the problem data was when were you were using CPAP? Were you still having a high AHI? RDI? or was the problem arousals? Any info would be appreciated.

Good luck to you on the surgery.

Thank you for the good luck!

On my first sleep study I had an RDI of 33 and AHI of 3 (sleep efficiency 56%). On my second one with cpap at 12cm/s I had RDI of 14 and AHI 0 (Sleep efficiency 88%). At Stanford I had a sleep study more recently but dont have numbers in front of me. It was somthing like RDI 9 and AHI 0 or close to those I think my sleep efficiency registerd 86% or so.. But I was having 9 arousals an hour I believe. The arousals I believe are what get me. There were mask leaks, hyponeas and some other things. I woke up feeling pretty good (as I did after my two sleep studies being monitored by attendants making pressure adjustments as need and fixing my leaking mask. THE PROBLEM IS we cant all have an attendant watching us all night. This is were I feel CPAP is not a good treatment because it is prone to WAY too many problems. I mean cpap only really makes about 20% of compliant users feel good. The noncompliant and the ones it just doesnt work for are the larger percentage by far. I certainly dont expect my wife to be at my side awake al night every night forever!!!! (She does that now!) She is an angel for feeling the effects of sleep deprivation taking care of a baby that wakes up about the time I do. She does not  have my higher blood pressure (4-6 years of this has taken its toll) though and as I get this fixed we hope to settle back to normal.

Note I have been diagnosed initially with very severe OSA and then later UARS. However all doctors still use the term sleep apnea though I have no apneas (hyponeas though). I have very few or no apneas with mask but feel ROTTEN with or without it. (admittedly a tiny bit better if I keep it on but I think it gives me more arousals).

So in the end I believe it is arousals for me with an ever growing sleep debt which not even CPAP helps with. Perhaps also long term sleep debt. I have claustrophobia but somehow I can keep the mask on for 6 hours at a time.  My wife monitors me all night every night and the same thing over and over. Snoring starts and then I start getting soaked in sweat (as airway collapses). She wakes me and moves me when snoring gets bad or she sees Im sweating. Ive tested moving my jaw forward at night using  a special pillow and locking my lower teeth forward of front with chin strap (not recommended). It makes all the difference for me.

As a final note even though my sleep efficiency scored as high as 88% or

Quote:

I mean cpap only really makes about 20% of compliant users feel good. The noncompliant and the ones it just doesnt work for are the larger percentage by far.

A lot of people on here have been trying to find those numbers, what is their source?  Do you have the breakout of the non-complaint and the ones that it doesn't work for?