UARS friendly physician

[SleepingUgly]

IF that's true, then it truly is a crap shoot. You can have no confidence that your EDS is caused by your SDB *and* that it's reversible unless you can eliminate your EDS by treating your SDB. True?

I like your skepticism, but I think this is going a little too far, one can assemble meaningful circumstantial evidence that SDB causes one's EDS. And I feel that my quest for good sleep has been hampered by my not realizing it was SDB, because my RDI was mild (11 pre-MMA), I also have insomnia (trouble falling asleep, staying asleep), and have other bad sleep hygiene, which have led me to waste time doing things like taking vitamins for adrenal fatigue instead of using CPAP.

So what kind of circumstantial evidence can help "convict" SDB? It has to be things that bad sleep is not as likely to cause. What about:

- acid reflux (well-known to cause and be caused by SDB)
- nocturia (Dr. Park and Dr. Krakow both say this correlates very highly with SDB)
- dreams of being underwater, panicked, anxious
- bed partner reports weird breathing at night, snoring, etc
- sleep poorly on your back

OK, I'll play the devil's advocate. In this case, we're not trying to "convict" SDB of acid reflux or nocturia or even arguing whether it's SDB. We're trying to "convict" SDB of causing EDS. My point was that lots of things cause EDS (and OSA may even cause irreversible EDS and irreversible cognitive issues), so how are we to be sure that surgery for SDB would eliminate the EDS? One could have some reasonable hope it would if other things that eliminate SDB (e.g, CPAP or MAD) eliminated EDS. But if someone tolerates CPAP well and has good numbers, and still is tired, why would we have confidence that surgery for SDB would do better than that? If the person doesn't tolerate CPAP, we can argue that any benefit the CPAP is doing for the SDB is being offset by the CPAP-related disruptions. But that's just a guess. In short, I don't think we can ever have confidence that EDS will be eliminated by surgery unless CPAP/MAD/Provent/Winx/anything else that treats SDB eliminates the EDS.

[SleepingUgly]

4) An MMA with Dr. Li or other Stanford doctors is not a panacea, but it's not going to disfigure you, either. It's just not as radical as people seem to think. I had a small and receding chin before the surgery; now I have a small and non-receding chin, but I don't like my nose. All in all, I'm probably mildly happier with my appearance.

Yeah, before I got it I found a study showing that ~80% of people find it improves their appearance (and 20% neutral - a worse appearance is rare). It's a side-bonus, not a side-effect.

I can't imagine that advancing anyone's jaw by 10-15mm would improve their appearance unless they have a receded jaw in the first place. The nose thing is a whole other issue that I don't have much to say about.

Two words of caution from this Devil's Advocate:
(1) Don't believe everything the person who stands to make $$$$ off you says about the surgery outcomes.
(2) Don't believe everything from those who would have cognitive dissonance if they didn't have a positive attitude toward the surgery.

Patrissimo & syzgy, I bet you've been in touch with many people who have had MMAs. They probably aren't a random sample, but anyway... What percentage of them were completely cured of their daytime symptoms?

[patrissimo]

OK, I'll play the devil's advocate. In this case, we're not trying to "convict" SDB of acid reflux or nocturia or even arguing whether it's SDB. We're trying to "convict" SDB of causing EDS. My point was that lots of things cause EDS (and OSA may even cause irreversible EDS and irreversible cognitive issues), so how are we to be sure that surgery for SDB would eliminate the EDS? One could have some reasonable hope it would if other things that eliminate SDB (e.g, CPAP or MAD) eliminated EDS. But if someone tolerates CPAP well and has good numbers, and still is tired, why would we have confidence that surgery for SDB would do better than that? If the person doesn't tolerate CPAP, we can argue that any benefit the CPAP is doing for the SDB is being offset by the CPAP-related disruptions. But that's just a guess. In short, I don't think we can ever have confidence that EDS will be eliminated by surgery unless CPAP/MAD/Provent/Winx/anything else that treats SDB eliminates the EDS.

That is an excellent rebuttal. And now that I think about it, given that CPAP "splints" the whole airway, while surgeries only apply to portions of the airway (even MMA, though perhaps not trach), if CPAP doesn't fix the EDS, perhaps it is less likely that surgery would. Though on the other hand, there is only so much that air pressure can do to splint, vs. removing obstructions, so it isn't so clear.

But, yeah, all else being equal, being able to tolerate cpap with low AHI, while still being tired, seems like significant evidence against EDS being caused by SDB, and thus against any SDB treatment (including surgery) to work.

[patrissimo]

I can't imagine that advancing anyone's jaw by 10-15mm would improve their appearance unless they have a receded jaw in the first place. The nose thing is a whole other issue that I don't have much to say about.

Two words of caution from this Devil's Advocate:
(1) Don't believe everything the person who stands to make $$$$ off you says about the surgery outcomes.
(2) Don't believe everything from those who would have cognitive dissonance if they didn't have a positive attitude toward the surgery.

Patrissimo & syzgy, I bet you've been in touch with many people who have had MMAs. They probably aren't a random sample, but anyway... What percentage of them were completely cured of their daytime symptoms?

I got pretty consistent feedback that it improved my appearance a little by giving me a stronger jaw, and I don't think people were just being polite. I think it looks better personally. My jaw wasn't recessed before, but it's bolder now. But I agree with your words of caution.

I have not been in touch with very many people who have had MMAs, outside these boards, and googling for the people who have blogged about the surgery, so I don't really know. I trusted the research, and Dr. Li, and I was desperate. And, sadly, still am...

[SleepingUgly]

Yeah, I feel desperate too. But not irrational. Yet.

Unless I've mixed you up with someone else, you haven't given PAP much of a try yet, have you? So there's still all the various PAP devices. My problem is that I get aerophagia at pressures that *might* alleviate EDS. But I admit that without knowing if they would alleviate EDS, I still can't be sure that my EDS is (1) caused by SDB, and (2) reversible. I do get some benefit from PAP over and above doing nothing, so there's that. Sigh.

[1041]

And, sadly, still am...

As I see it, there are two causes of MMA failures,
reflux and tissue damage.

Reflux is known to cause arousals and tissue
damage is postulated to allow the airway to keep
shutting even in the face of MMA.

But MMA failures can rule out reflux by sleeping
inclined and taking a PPI. And rule out tissue
damage by an endoscopy that would reveal if
their airway is still closing at night.

[SleepingUgly]

How would reflux cause MMA failure? And I have no idea what you mean by "tissue damage". Do you mean erosion in the esophagus due to reflux?

If you have reflux, treat it. Why wait for an MMA to treat it?

Also, what does "failure" mean? Failure to attain desired results in terms of daytime functioning? I have no doubt that MMA failes to attain desirable daytime functioning in many more than <1% of the cases, and it ain't because of reflux.

[1041]

By MMA failure I mean the 13% or so of patients who don't
feel significantly better after the operation. Like
patrissimo, syzygy, and phoebe.

By tissue damage I mean things like destruction of nerves
in the throat, formation of connective tissue in the throat,
conversion of muscle fibers from type I to type II, and
inflammation, which are postulated to cause the airway
to shut during sleep.

An example: snoring damages nerves in the throat that
normally sense negative pressure (airway closing).
Normally this stimulus would trigger the brain to activate
muscles that stiffen and hold open the airway, during sleep.
The tongue exercises aim to regrow these damaged nerves.

[1041]

Patrissimo & syzgy, I bet you've been in touch with many people who have had MMAs. They probably aren't a random sample, but anyway... What percentage of them were completely cured of their daytime symptoms?

thedreamer in his My Sleep Apnea Journey blog sums it up well:

"One thing became clear in the meeting. Almost everyone who had MMA were still dealing with sleep issues. Except for one or two people no one reported a complete cure. While many reported improved RDI or in some case no improvement in RDI, they seem to have subjectively improved about 50% (about mine)."

[purple]

Might you have a heart/lung problem in a addition to needing xPAP?

[SleepingUgly]

thedreamer in his My Sleep Apnea Journey blog sums it up well:

"One thing became clear in the meeting. Almost everyone who had MMA were still dealing with sleep issues. Except for one or two people no one reported a complete cure. While many reported improved RDI or in some case no improvement in RDI, they seem to have subjectively improved about 50% (about mine)."

That contrasts with the 90% "success" rate quoted by the practitioners.

[1041]

The people who say they improved about 50% consider their operation
a success. The patients and surgeons agree on the 90% success figure.

[SleepingUgly]

Darn, I had a reply and lost it to cyberspace.

I think it's OK for me to be the devil's advocate, but I'm starting to feel too much like I'm in the role of trying to talk you out of an MMA. You are the one that needs to do the cost-benefit analysis for you. Clearly for me, I don't think the costs outweigh the benefits, but you have to come to your own conclusion for yourself.

[syzygy]

4) An MMA with Dr. Li or other Stanford doctors is not a panacea, but it's not going to disfigure you, either. It's just not as radical as people seem to think. I had a small and receding chin before the surgery; now I have a small and non-receding chin, but I don't like my nose. All in all, I'm probably mildly happier with my appearance.

Yeah, before I got it I found a study showing that ~80% of people find it improves their appearance (and 20% neutral - a worse appearance is rare). It's a side-bonus, not a side-effect.

5) The one issue I would say I wasn't prepared for is the fact that my muscles seemed to have atrophied a bit after the surgery. I probably always had weak respiratory and facial muscles, and things may have gotten worse after the MMA. As a general principle, I think that people focus too much on static phenomena (shape of airway, fatty tissue) and not enough on dynamic phenomena (respiratory system, tongue and throat musculature). I am doing all kinds of rehab and breathing exercises, and that seems to be helping greatly.

Totally agreed on the dynamic phenomena, "Sleep...Interrupted" has a lot of good things to say about this. SDB just has a ton of feedback loops, like "acid reflux -> apnea -> acid reflux", and "apnea -> insomnia -> apnea". Can you tell us more about the rehab & tongue exercises you are doing, where you learned them, and how long they took to help? I tried the didgeridoo, it didn't help, and I've considered some of the oropharyngeal exercises but it seems like a lot of work for an uncertain outcome.

6) I've found it helpful to deal with SDB's effects independently of dealing with SDB itself. So I'm taking thryoid hormone, iron, etc. (yes, I'm doing so in consultation with a doctor). This isn't a game changer, but it does make a dent in the vicious cycle we all know so well.

Right, with vicious cycles, anything you can do to alleviate any node in a feedback loop can help move the entire system in the direction that you want. I'm taking thyroid hormone as well. I'm curious what type of doctor you found who was able to help you treat the effects, what treatments seem to have helped most, etc.

Thanks,
Patrissimo

Exercises:

The most helpful thing I tried is using a device called a PowerLung. You can look it up on Amazon; you breathe into it and it adds resistance during both inhalation and exhalation. I can't say that it will help other people, but it made a huge difference in my sleep (it got worse, first, though--it takes a couple of weeks to get used to it). One can hypothesize that weak breathing and tongue muscles and narrow airways codevelop during childhood. While I'm not really sure if this is true in general or not, I seem to have had both.

You can augment this simply by lying on your back on your bed with your head and part of your shoulders off the bed.

I've also worked with a speech therapist, and she's given me a ton of exercises related to my specific situation. I have a really weak tongue and we're trying to get it to stay on the roof of my mouth.

As I think you've learned, it takes time for any changes to take effect. I would say to allow a month.

Doctor:

I saw Dr. Romeo Mariano in Monterrey. He's very expensive, but he knows about a ton of medicines. In my own case, my thyroid was lowish, and my iron levels were as well. Supplementing those two things are the mainstay of my treatment. I also take various vitamins (I know you say you using them was a waste of time, but that hasn't been the case for me). I haven't had a cold in years, never have reflux, etc. I attribute that to (fairly) healthy eating and taking vitamins.

Dr. Mariano is a big believer in reducing inflammation. I was on Celebrex for a while (didn't want to continue long term), and that seemed to help. As you pointed out, breaking the feedback loop can at the least stop things from getting worse. I'm now taking large doses of niacin (I'm one of the few people that likes it--be careful with dosages if you ever try this) as well. It obviously doesn't help with specific sleep issues, but I feel that I'm better taking it than not.

FWIW: I recently had another sleep study. I was not able to sleep all that long, mostly due to being traumatized by sleep studies and sleep apnea treatments in general and hating having those wires attached to me yet again. But I do think that my results are somewhat relevant and show that this isn't all delusion.

AHI: 0.7
Number of obstructive apneas: 0.
Number of hypopneas: 0.
Average oxygen level: 97%.
Minimum oxygen level: 95%.

I do still have a lot of RERAs, and my RDI was something about 24. I wake up too early and have fragmented sleep. But I'm moving in the right direction. I am not desperate, and life is not intolerable the way it was before.

[lostsheep]

Patrissimo - If you are still following this thread, thank you for your thoughtful comments back in December. When I'm in a holding pattern on my therapy, I'm not too consistent at checking in on this forum. It tends to keep me up too late at night

After 4 weeks, ASV has improved my daytime energy and alertness - gradually, but definitely. However I have several issues with this therapy, the most difficult being aerophagia. It messes up my digestion! (And no it is not from GERD, although I might be developing that now, too.) My eyes and throat are chronically irritated since starting with ASV. (Hah - feel much better, but look like crap.) I might now need a full face mask, but that is another thread.

As far as MMA, I've got 3 new factors to consider:
1. I'm finally seeing a correlation between sleep therapy and the way I feel during the day. Finally!
2. I'm seeing that for me, sleep therapy may never be without daily side effects. (And not to forget, it is already a lifestyle issue for us off-the-grid, outdoorsy types who likes to experience 3rd world countries...)
3. I learned that I am essentially un-insurable with OSA, unless I am covered by an employer. After suffering all year, and paradoxically being unable to work - this realization really shook me up! (I'm SO grateful that I could at least get the ASV treatment underway before my COBRA ran out.)

I already know that MMA will correct my bite - I've got class 2 malocclusion that was only partially compensated by orthodontia. I already have lots of crowns due to molar stress, so maybe it's too late to prevent most of the damage there. Referring to previous comments in this thread - I think it is technically correct to say that I have a cranio-facial abnormality. And no, doctors never pointed it out; however is evident to an orthodontist. And not terribly unusual.

As much as surgery terrifies me, and will deflate my 401k, I'm starting to think it makes sense. This thread has me a bit worried, though. Two different sleep doctors said MMA would take care of my sleep issue. As in, make it go away. They were both pulmonologists. I don't really know how much they base their opinion on the nature of my obstruction. They did say that they consider an OSA person with normal BMI and generally good health to be a candidate for surgery. I later learned that my OSA can be categorized as "hereditary", but they didn't refer to it like that. I asked the ENT that checked me for GERD; she was less sure on surgery, based on very little professional experience with MMA. She did share my skepticism about soft-tissue surgery, which has never been recommended for me anyway. That may be because my tonsils are long gone, and I don't snore.

My primary care doctor said something like "A lot of times these surgery decisions are made when people just decide that they've had enough".

I'm a bit freaked out that both surgery and OSA become more problematic with age. I feel pressured to do this as soon as possible, if I'm going to do it at all.

Well there, I've shared most of my thoughts on this. Not an easy thing to be sure about, is it?