UARS friendly physician

This scares me about HomeoBlock. Describes the little gum protrusions between the teeth (papilla) as getting stretched out like an old sock with the device. "Once stretched, can't be restored."

google: supo a must read for all adult orthodontics

This made me start questioning all dental treatment for sleep apnea.

SleepingUgly wrote:I
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.

I also had an MMA with Dr. Li. I, too, still have problems but feel that it was worth it. Patrissimo covered the pros and cons quite well; I would add the following:

1) To paraphrase Euclid, there's no royal road to sleep apnea. It could be due to not enough space behind the tongue, to excessive fatty tissue, to weak respiratory muscles, and so forth.
What the MMA does is eliminate one of these problems. If you have other issues, it won't help with them.

2) Having said that, almost no one regrets having an MMA with Dr. Li. I wouldn't focus on the one person who ended up with a tracheostomy; she's a statistical outlier, but even she doesn't regret it as far as I know.

3) Many people on the UARS side of the spectrum have hypersensitive nervous systems. For these people, CPAP may help in the sense of keeping the airway open, but it may be hugely disruptive to their sleep as well. Whether or not this counts as CPAP improvement is subject to interpretation. For me, the negatives strongly outweighed the positives.

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.

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.

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.

Just thought I'd chime in here since I was mentioned in some of the posts. I also haven’t posted on my tracheostomy experience. First off, I agree with Patrissimo's and Syzygy's posts. Like Syzygy, my RDI was unchanged post MMA surgery but I did feel much improved symptomatically. I felt most improved for about the first 4 months post-surgery and then I started to regress. This seems to happen to me with every apnea treatment (cpap, oral appliance) resulting in a false positive treatment outcome. I do not regret having the MMA surgery as it allowed me to hold down my job for a little longer until I found a more permanent solution. In my case, I believe my large tongue is the culprit - post-MMA surgery I could still feel it collapsing and occluding my airway. I then went back on cpap which didn't work because my different jaw structure caused me to swallow air which resulted in aerophagia. I then went on bipap, then auto-bipap which were unsuccessful and also gave me bad acid reflux. I don't know why they didn't work.

I finally convinced my Stanford docs to recommend a tracheostomy. Keep in mind I was REALLY desperate and basically non-functional. They told me they would write a letter stating that I failed cpap, bipap and mma but wouldn't necessarily recommend a trache. If you ask your sleep doc for a trache they will think you are crazy, even the Stanford docs! Fortunately, Dr. Li helped out. I told Dr. Li that I would like a trache - he doesn't do the permanent ones so he wrote a letter for me referring me to a colleague at UCLA who performs them regularly. I don't think I could have gotten the trache without Dr. Li's help. I read the sleepnet boards too. There was a UARS individual who had mma surgery who still felt symptomatic. She asked Dr. Li for a temporary trache as a test to see if her sleep problems resulted from a sleep breathing disorder. Her sleep improved dramatically so she knew it was from SBD.

The permanent trach was not a walk in the park at all and has been more difficult to recover from than MMA surgery, mainly because there are many things the docs don't tell you about. I thought I cracked a rib with all the post-surgery coughing. Central sleep apnea also develops after the surgery which leaves you with a hungover feeling for about 4 months.

I am now a member of a tracheostomy board (apparently there is a subset of sleep apnea people who ultimately had to resorts to traches, mainly because they were morbidly obese). Some even have bipap attached to their trach because they also have central sleep apnea!!
Besides being unable to swim and cleanliness issues, you have to wear a stent at night to keep the stoma open. Finding a well-fitting stent was hard. Stoma stents/buttons don’t work as well as advertised so I wear a short laryngectomy tube. You will also have to sleep sitting in an upright position since your lungs don’t expand as well. I had to get an adjustable bed for this. You will also have to make sure the air going into the trach is well humidified ( a room humidifier won’t work and causes mold). I wear a trach mask attached to tubing attached to an air compressor which pumps out humidified air. The air compressor is REALLY noisy. Cleaning the trach and the tube takes less time than brushing your teeth however.

Once I was trached I thought my sleep would improve immediately but I had other things affecting my sleep such as allergies, acid reflux, caffeine and using the computer too close to bedtime (staring at a bright screen reduces melatonin). Sleep hygiene is really important.

I’ve actually been off work since my trach surgery which was done this past Nov. 2011 to focus on recovering and my sleep problems. I’m finally getting some decent sleep – I don’t have that tired/wired feeling, insomnia issues, and excessive daytime fatigue anymore. I’ve been sleeping 9 hours a night with lots of dreaming. I do wake up several times but fall back asleep easily. I get a little sleepy in mid-afternoon but I think everyone does.

Overcoming sleep apnea was THE most difficult experience in my whole life. I’ve dedicated the last 5 years treating this disorder and have spent well over $60k treating it. I can finally say with a high degree of certainty that I no longer have a sleep breathing disorder.

phoebe368 wrote: I can finally say with a high degree of certainty that I no longer have a sleep breathing disorder.

That's great news, phoebe368. I know you've had a long journey, and it's hard when few people understand what you're going through (this includes people with sleep apnea as well). I'm really glad that you've found a way to overcome your problems

These exercises were really effective. I tried them and suggested them to my family members and friends also.

SleepingUgly wrote:no residual events noted in the lab or on my machine, I would personally be very leery of surgery for SDB

I wish there was objective data and that researchers would study what predicts improvement with MMA.

predictors of MMA success, such as improvement with CPAP or improvement with a MAD

seems to me like it's a crap shoot as to who will get better and who won't

Okay you mentioned this many times and I finally see what you
mean.

A trustworthy surgeon tells me that being not so many failures
from MMA, there are simply not that much numbers to have done a
study ("If you do 100 patients a year which is a lot, 2
surgeries every week, that's still only 5 failures"). Also, a
study is not as worth pursuing because the success rate is high.

I asked what about a Pes study at Stanford with very low RDI;
wouldn't that indicate that MMA will fail?

He said no.

Perhaps this means that he has not noticed any patterns in the
failures of MMA in practice. Dr.Li seems to hold the same view.
If they have done so many surgeries and have not noticed any
pattern after years of thinking about this.. there must be no
correlation between MMA success and MAD/Pes/cpap results.

1041 wrote:If they have done so many surgeries and have not noticed any pattern after years of thinking about this.. there must be no correlation between MMA success and MAD/Pes/cpap results.

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?

True.

1041 wrote:True.

Well, on the upside, your cognition is still intact.

Did you discuss with the surgeons how they define success? If it's the same way your CPAP machine does (i.e., AHI<5), then you've already achieved it without surgery. Somehow I doubt that they define success by an AHI < 5 AND no daytime symptoms.

Thank you for pointing out the distinction between objective success
and subjective success.

Besides those that led to your nose and throat surgeries,
SleepingUgly, doctors have never said you have craniofacial
deficiencies?

1041 wrote:Besides those that led to your nose and throat surgeries, SleepingUgly, doctors have never said you have craniofacial deficiencies?

Hmmm, I think they said I was ugly...

Also, they were a little surprised by my blue hue.

Has anyone said you had craniofacial "deficiencies"? In my mind, to be a true "deficiency" (is that even the right word?), it would be obvious to every doctor who sees you. If they don't agree that you have it, how deviant can it be? So I think, anyway.

I meant including things like deviated septum
and enlarged turbinates. Any structural thing
contributing to sleep disruption.

By that definition I have several including
receded jaw.

syzygy wrote: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.

syzygy wrote: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.

syzygy wrote: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

SleepingUgly wrote: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