UARS friendly physician

He asked me to touch the tip of my nose with my tongue. Then my chin. Then make a U. Then press against the roof of my mouth behind my front teeth. Then make a clicking sound. I couldn't do it as fast and consistently loud as him. "See? Your tongue is weak."

He made an analogy about how when you walk, how do you know how hard to step or how to place your foot? Nerves from your foot, "sensors," send signals back to your brain. So when we sleep, tongue nerves send signals to our brain that enable the proper breathing reflex (?)

He showed me myofunctionaltherapy.blogspot.com and said do these exercises 15 minutes in the morning and 15 minutes at night for two years.

And another of my posts mysteriously vanished.

Too rich for this board? Give me a break.... A wiggling tongue .gif

I don't think I fit in too well around here. Blah

I'm constantly being censored. You would think I'm posting friggen porno or something. WTF.

But "pissing funnel" posts by obnoxious old men are ok?

/Back on topic - sorry for any derail. I'm actually interested in the OP to but C'mon people. What has this place become

lazer wrote: And another of my posts mysteriously vanished.

On this thread?

kaiasgram wrote:

lazer wrote: And another of my posts mysteriously vanished.

On this thread?

Yep, pretty much every thread I post in these days...

OMG! Lazer posted a "wiggling tongue" image! Call the Internet Police and hit "SPAM".... It's a race!!!

1041 wrote:I get the impression that your residual sleepiness is not so severe; perhaps you feel you're sleeping at about 70%. I know the feeling - on good days like today (even though if you ask me I will admit I'm only functioning at 70%) I can't remember why I feel so desperate on bad days to fix the problem.

(this goes to anyone as well) Suppose you believe that you ARE one of the people who would benefit - consultations with trustworthy doctors confirming this - who claim a 50% improvement in their sleep from MMA. 50% improvement is a lot. That is a lot of prevention of break-down of your body and brain which is occurring due to your less than optimal sleep.

Then you would undergo MMA? Because the only thing holding you back is that you have no reason to think you are one of the people that it does help?

I got an MMA from Dr. Li in 2009. I am a pretty classic UARS: mild SDB by the numbers (AHI 10-11 pre-surgeries, min O2 sat 89%-91%), with horribly unrestful sleep for the last 10 years, wake up 2-10 times every night, now feel like my body and brain are slowly decaying into premature senility (I'm 36). I got modest benefit from the procedure - sleep average of maybe 5.5/10 per night instead of 3.5/10, my AHI decreased from 10 to 5. I don't regret the procedure at all, even though I chose it out of desperation and it did not help as much as I hoped.

I guess it all depends on how bad things are. If you are getting by OK, then MMA is a big step, it's expensive and a lot of recovery time. For those who suffer enough to be slowly & steadily moving towards disabling exhaustion, why not do it? Here's one possible test: if you've ever considered, even slightly or for the future, that you'd be desperate enough to get a trach, you should get MMA and other soft palate surgeries first. If you feel well enough that a trach is totally out of the question for the foreseeable future, you probably shouldn't have a doctor break your face in half either .

Patrissimo, thanks for chiming in. How did you feel on CPAP, which I assume you tried prior to the MMA?

SleepingUgly wrote:Patrissimo, thanks for chiming in. How did you feel on CPAP, which I assume you tried prior to the MMA?

I tried CPAP for several months prior to the MMA, including a titration sleep study and an APAP (AutoSet Spirit). At the time, I felt I was never able to get used to it, and it didn't help my sleep. After reading this forum more thoroughly, I will say that I don't think I gave it enough time and effort. I didn't expect it to cure me in a week, but I did think that a month was plenty to see if it would work. I'm back on this forum because I'm going to try CPAP again, with the hope that my MMA and other surgeries will have helped enough that CPAP will be more tolerable & effective.

Without going into my whole health history, I'll say that I'm one of those sufferers who is nothing like the "overweight old man" stereotype, but very much like what's described in Dr. Park's book. I'm young (apnea started in my 20s, diagnosed at 31, now i'm 36), athletic, not a lot of snoring, etc. BUT I have a history of allergies and asthma, a narrow jaw (Dr. G literally walked in the door, took one look at me and said "UARS, you had braces as a kid", and something about my wisdom teeth), frequent nasal congestion, acid reflux, and a high-energy, enthusiastic personality being ground down by years of sleep deprivation.

With stimulants (caffeine every day, provigil a few times a week), sleeping pills to make those awful nights pass faster, or to catch up with crappy naps, and my natural energy I was able to overcome it for years, and then to fake it on occasion when necessary. But I was draining my reserves and eventually I crashed in 2011. I will note that my crash came after my septoplasty, tonsillectomy/adenoidectomy, and MMA surgery. They helped noticeably, but I still feel a net loss of sleep 9 out of 10 nights.

Let's see...I think there are some conflicting considerations. On the one hand, CPAP not working is an indication that your problem may not all be SDB. There are other reasons why CPAP might fail, but surely SDB is less likely if CPAP fails. On the other hand, if CPAP doesn't work, and you still have bad sleep, then you are naturally more desperate to try something. And let's not forget that even though CPAP & MMA both treat SDB, they do it in different ways. One creates positive airway pressure, the other enlarges certain parts of your airway. Just as people find very different results from different surgeries depending on their airway anatomy, so they may find different results from CPAP/MMA.

For example, before my MMA I saw two doctors at Stanford, one said "you seem like classic UARS, you are young and so surgery makes more sense than a medical device, you should do it", the other said "CPAP didn't work, I'm worried you don't have apnea, and this is a really major surgery, you should try other things first".

I'm sorry I don't have a simple summary, but this is a complex topic. I will admit that I'm generally pro-surgery, because I think that a permanent solution, amortized over your whole life, is better than the hassle of a device, especially if insurance will pay for the surgery. I am very glad I got mine, even though it only helped modestly - better to be halfway to fixing this huge problem that is slowly draining my life than to have gotten nowhere.

But, especially for those with complex and hard to treat cases (for example, CPAP-resistant), you definitely shouldn't expect it to be a miracle cure. Heck, even people who get trachs don't always find it a cure! Of the few who are that desperate, most say it cured them 100%, but a few found it hardly helped. If bypassing the entire airway doesn't always cure this problem, then MMA surely isn't going to. And it's expensive, and a lot of recovery (days in the hospital, months at home). I would definitely try CPAP & soft tissue surgery first.

And I would approach it as part of the solution, or a gamble at the solution. Don't do it because you think it's 90% going to cure you - if other things haven't worked, then your chances are probably lower. Think of it as 50/50 to get you 90% better, or think of it as something that will probably help at least 50%.

Happy to answer any specific questions, or engage in debate about the merits of MMA .

Interesting. Thanks for giving us your view point. How many years out from the MMA are you? Also, how much of a difference do you feel it's made in your quality of life? (I'm interested, but at the same time I am cognizant of the fact that cognitive dissonance would suggest that you're going to rate your quality of life as improved simply because you underwent a serious surgical procedure to that end. Not that you're dishonest; it's just a psychological phenomena that happens to us all.)

I wonder (and I'm just wondering out loud) whether there are predictors of MMA success, such as improvement with CPAP or improvement with a MAD (did you try one?), etc. So far it seems to me like it's a crap shoot as to who will get better and who won't. That's not good enough, IMO.

patrissimo wrote:BUT I have a history of allergies and asthma, a narrow jaw (Dr. G literally walked in the door, took one look at me and said "UARS, you had braces as a kid", and something about my wisdom teeth), frequent nasal congestion, acid reflux, and a high-energy, enthusiastic personality being ground down by years of sleep deprivation.

Same for me all, except I don't have GERD (maybe LPR). I also read Dr. Park's book and get the idea that our energetic temperament is a result of our chronic low-grade stress.

Why not get a tracheostomy before MMA, since if it works you know what the problem is, and can proceed from there (closing the tracheostomy if you want).

1041 wrote:

patrissimo wrote:BUT I have a history of allergies and asthma, a narrow jaw (Dr. G literally walked in the door, took one look at me and said "UARS, you had braces as a kid", and something about my wisdom teeth), frequent nasal congestion, acid reflux, and a high-energy, enthusiastic personality being ground down by years of sleep deprivation.

Same for me all, except I don't have GERD (maybe LPR). I also read Dr. Park's book and get the idea that our energetic temperament is a result of our chronic low-grade stress.

Why not get a tracheostomy before MMA, since if it works you know what the problem is, and can proceed from there (closing the tracheostomy if you want).

I didn't research it thoroughly before my MMA because it is considered such a dramatic treatment. I looked into it recently, and while it is surgically much simpler than an MMA, it is much more serious long-term, in the daily care required, the cleaning issues, health risks, lifestyle impact (you can't swim), and of course it looks really strange and that can cause problems at work, with romantic partners, etc. If nothing else works, and the evidence is that I just have a really stubborn airway, then I'll probably do it (better a hole in the neck than being a zombie), but thankfully I have other things to try first (like CPAP again!).

SleepingUgly wrote:Interesting. Thanks for giving us your view point. How many years out from the MMA are you? Also, how much of a difference do you feel it's made in your quality of life? (I'm interested, but at the same time I am cognizant of the fact that cognitive dissonance would suggest that you're going to rate your quality of life as improved simply because you underwent a serious surgical procedure to that end. Not that you're dishonest; it's just a psychological phenomena that happens to us all.)

I got the MMA in early 2009, so about 3.5 years now. Quality of life...hmm...that's really hard to say because of the difference (at least in my perception) between nightly sleep quality and accumulating sleep debt/damage. I went from waking up 4-6 times a night to 2-3 (though that has been increasing again lately). From having 2-4 hours as my first "chunk" to it being 4-5 (that has stayed). Provigil from 3-4x/week to 1-2x/week.

On the one hand, those are all pretty significant, and matched my subjective experience of improved sleep quality. On the other hand, I only lasted 2 years after the MMA before encountering an enormous combination of stressors from which I have not yet recovered, and feel like I'm not going to recover without better sleep. And that produced some of the later-stage effects that Dr. Park mentions briefly: abnormal thyroid & cortisol levels, frequent "tired & wired" feeling, etc.

So, good but not good enough?

SleepingUgly wrote:I wonder (and I'm just wondering out loud) whether there are predictors of MMA success, such as improvement with CPAP or improvement with a MAD (did you try one?), etc. So far it seems to me like it's a crap shoot as to who will get better and who won't. That's not good enough, IMO.

Yep, I tried an MAD before MMA, and it helped a fair bit, maybe about 2/3 as much as the MMA ended up helping? But it was hurting my jaw to continue using, and Dr. Li said it was starting to mess up my bite. And of course I was hoping for substantially more improvement from the MMA than the MAD, not a little bit more improvement.

As I said earlier, I think that if you have stubborn enough OSA that you're willing to consider MMA, that a) you shouldn't expect anything like a 90% cure rate, b) it still may be worth it anyway. Try CPAP first, try soft tissue surgeries, try sleep restriction therapy, but you can't live without sleep.

The main alternative that I think is worth looking into at this point is the HomeoSplint that Dr. Park did a podcast interview on - over 1-2 years it helps grow the jaw and remodel the face, really amazing stuff, and done through triggering your body's own growth mechanisms instead of breaking your face in half. If it's really as good as he says, seems like an awesome option.

I googled HomeoSplint, but that must not be close enough to bring it up.

How much did the MMA change your appearance? Did you have a recessed chin prior to the surgery?

So when do you get your CPAP?

SleepingUgly wrote:I googled HomeoSplint, but that must not be close enough to bring it up.

How much did the MMA change your appearance? Did you have a recessed chin prior to the surgery?

So when do you get your CPAP?

Oops, it's HomeoBlock.

MMA made my chin a bit stronger. It wasn't recessed before, but it's definitely more jutting now. Most people barely notice, it's a modest change, but I had one person who I hadn't seen for a year or two just completely not recognize me even while talking to me. Guess different people cue off different facial features.

My mask headgear had disintegrated since I last used CPAP in 2008, so as soon as the replacement comes, I'll start trying it.

Patrissimo, thank you for sharing your experience. I'm sorry to hear that previous medical procedures have not freed you from SBD.

I am another person who fits UARS symptoms pretty closely. I was advised to consider MMA based on the extremely small size of my airway, specifically behind my tongue. Did you ever have a cephalogram evaluation with that type of measurement?

Similar to you, have a narrow jaw and two previous rounds of orthodontia. A subsequent sleep study confirmed the orthodontists prediction of SDB. I never had a clue - just increasingly worse episodes of fatigue over the course of my life, which could never be explained. Looking back, the fatigue episodes typically followed a respiratory illness, but were also more likely when my system was stressed.

Over the last 9 months, I've technically "failed" CPAP, and then BiPAP... and am just now starting ASV. It has been an extremely frustrating year, and I wonder if 6 months of surgical recovery might have been preferable - at least it would include some hope of recovery. I was under the impression that MMA would just fix the problem. Did Dr. Li ever estimate the actual odds of recovery for a patient with your characteristics?

lostsheep wrote:I am another person who fits UARS symptoms pretty closely. I was advised to consider MMA based on the extremely small size of my airway, specifically behind my tongue. Did you ever have a cephalogram evaluation with that type of measurement?

I believe Dr. Li did head scans (not sure if it was CT or X-Ray), and he confirmed I had a small airway, but I don't have a specific measurement.

lostsheep wrote:Similar to you, have a narrow jaw and two previous rounds of orthodontia. A subsequent sleep study confirmed the orthodontists prediction of SDB. I never had a clue - just increasingly worse episodes of fatigue over the course of my life, which could never be explained. Looking back, the fatigue episodes typically followed a respiratory illness, but were also more likely when my system was stressed.

Yeah, that makes sense. I don't know if you've gotten there yet, but with the positive feedback loops in SDB, unless you can treat it, as your fatigue builds, you'll find those episodes last longer and longer until they are continuous. (respiratory illness -> worse breathing -> bad sleep -> systemic inflammation, stress hormones, etc -> worse breathing...)

lostsheep wrote:Over the last 9 months, I've technically "failed" CPAP, and then BiPAP... and am just now starting ASV. It has been an extremely frustrating year, and I wonder if 6 months of surgical recovery might have been preferable - at least it would include some hope of recovery. I was under the impression that MMA would just fix the problem. Did Dr. Li ever estimate the actual odds of recovery for a patient with your characteristics?

He did not. I think MMA gets a bit oversold as a guaranteed cure - it's substantially less effective than a trach, and even that doesn't cure some people. The 90% figure, as I understand it, is for some combination of "halving AHI" and "Bringing severe OSA down to AHI < 20". It's not 90% of getting AHI < 2.5, or not needing CPAP, or feeling fine. In my case, it halved my AHI from 11 to 5, so I'd fit in the 90%, but I still have slowly declining health. So, MMA is close to a guarantee of substantial improvement of your numbers, but not of being cured.

I would say the two biggest considerations are: 1) will insurance pay? 2) how do you feel about surgery? It's really expensive, which is why (1) matters. On (2), people seem to have really different attitudes towards surgery. A lot of people on these boards seem to see it as a last resort, highly dangerous, to be avoided if possible, etc. Personally I'm delighted to "pay" a few months of recovery for a permanent improvement in my airway - I like the idea of reshaping my body for the better. I was happy to trade in glasses for lasik (even though my vision isn't quite as sharp), and even if I'm on CPAP the rest of my life, I'm happy to have gotten the MMA so that I can have lower CPAP pressure, more efficacious CPAP (knock on wood), and be able to be off the grid and have sleep that's just bad and not terrible.

If CPAP isn't working for you, and you've tried the soft tissue surgeries, the only compelling alternative to MMA I see is one of the orthodontic devices (DNA or HomeoBlock) that remodels your jaw. It's like $5k and hard to cover with insurance, and you have to use it as a retainer to hold the shape, but it supposedly works in 6-24 months (not that much longer than MMA recovery), and it seems much healthier to encourage your jaw to grow in a better shape than to chop, move, and reattach.

p.s. I blogged a fair bit about my MMA decision & experience, here's the link, it'll come up in reverse chronological order:

http://patrissimo.livejournal.com/tag/mma