A few days ago, I attended the MMA get-together at Sunnyvale. About 25 people showed up. Last year, this was a week before my MMA and a life-saver. I honestly could not have gone through with the surgery without the encouragement from everyone in this meeting. I remember vividly being jealous of everyone on the "other" side. Can't believe I am there, I saw the same look on people who are just about to undergo MMA!
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). Everyone agreed that subjective judgement on how the individual felt was the most qualitative judgement as opposed to looking at the overnight sleep analysis report. Everyone agreed that MMA was worth it and if they had a choice, they would do it again. Many were considering auxiliary surgeries for further improvement. Others were trying out various kind of drugs (reluctantly), while others have gone back to CPAP.
Another thing, most people in the meeting were suffering from allergies. There was a strong correlation to allergy control to improved sleep quality. I find this the case for me as well, where I have a highly inflated turbinate on my right nostril. After having undergone two unsuccesful RF turbinectomies, treating it with Flonase (somewhat successful), and the doc removing the underlying bone behind the turbinates during MMA (somewhat successful), I am still trying to deal with swollen soft tissue. My latest attempt is Dr. DS's lavage made out of Pulmicort respules. I mix this in 240 ml of saline solution and do a lavage before going to bed. This seems to have shrunk my turbinate quite a bit. On days like this when I can breathe much better, I feel so much brighter the next day.
The other think I learnt in the meeting was that I had 0% Stage 3/Stage 4 sleep. Western Joe was kind enough to look through 3 of my reports and give his perspective. Clearly my sleep efficiency had improved and also my REM sleep as measured in % time had improved, but there was 0% in Stage 3 and Stage 4 in all my reports. It is hypothesized that Stage 3/Stage 4 are very good for the brain recovery. There was one another lady, who brought her reports. She had surgery two years ago, her first post MMA study showed Stage 3/Stage 4 but the recent study showed 0 Stage 3/Stage 4. She also showed increased RDI. She was the first one where she was regressing after MMA I know of. Couple of others like Western Joe, and Cupertino Joe who are 6/7 years are holding up well. Western Joe told me that he slept for 9 hours and even then it took about an hour to emege from his grogginess. He is the one whom I could strongly correlate to, felt good that I was not the only one. Have to get the doc to take a closer look at my report.
A couple of years ago, the doc told me that 90% of people who had MMA are completely cured. He defined cure as RDI of less than 5. Now I know that this is clearly bunkum. Some people now claim that the expectation should be a 50% improvement after MMA. Sad to say, I am afraid there is no magic silver bullet. Still I think most people are happy that afternoon somnolence has disappeared and their energy is holding up well during the day. I'll take my blessings.
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Thank you for the update on the surgery meetup. I was unable to attend but was curious as to what was discussed. I had the mma surgery this past Jan. and feel comforted that people have have similar experiences as myself. My RDI was unchanged but I feel significantly improved (about 60%) and am back on cpap. I do not regret the surgery at all. I may explore other surgical options in the future. I have also come to realize that there is no silver bullet for treating apnea - it can only be treated and not cured. This has left me a bit discouraged but then I have to look on the bright side - I'm glad I had access to the best medical treatment in the world I just hope and pray that a cure will be available in my lifetime.
ReplyDeleteYou mirror the feelings and the general results at the MMA meet. Personally I expect the apnea to get worser as we age, because the muscles will lose some flaccidity. I hope its later than sooner. And yes, another reason that there is another good solution before that happens!
ReplyDeleteHi Dreamer, I'm considering MMA surgery with Dr Riley and wanted to speak with some of his former patients. Would it be possible for us to meet somewhere in the South Bay? My gmail account is 'akawale'. Thanks!
ReplyDeleteReaders of this should be aware that seems like a strong negative bias as far as the sample of individuals mentioned. The people having long-term MMA meetups are likely to be those that had complications, or less than stellar results. It seems allergy is the root cause here, and MMA is not intended to fix that, though even here it seems to have helped somewhat. I personally know of someone that had sleep apnea caused solely by allergy; looking at his jaw structure, no way that physiology was the cause and MMA would have likely done nothing, his jaw-line was strong and pronounced (he had the allergy taken care of, and now sleeps perfectly fine).
ReplyDeleteThe medical literature is well established as far as the success rates for MMA and what it can and can't do. This is a very misleading, anecdotal journal entry.
I had MMA and I sleep like a baby now (no CPAP, no dental appliance, nothing, I just go to sleep). Slept 7 hours last night and today I have plenty of energy, no grogginess. Before surgery, on nights when I wouldn't sleep with a CPAP, I'd be tired and wake up with a headache. I'm not going to go out of my way to post a blog, or go to meet-ups with those that had less than stellar results. What would be the point of that? Like with any product/service, there is a negative reporting bias with any reviews.
Readers of this blog considering the surgery should read up on the peer-reviewed medical literature and take any web-based anecdotes with a grain of salt.
I researched this surgery a ton, and this was one journal entry that really scared me, but I looked at the medical data, trusted it, and went ahead with it. So happy I did.
PS - Go to Dr. Kasey Li for it, best doctor I've ever had
I am not opposed to MMA. In fact I thank my lucky stars everyday from the improvement I have had from MMA. As I have noted, almost everyone who has had MMA are happy they did it, even if it did not completely cure them. My point was that medical literature claims 70% cure from Phase 1 and 95% cure from MMA as defined by less than 5 RDI. My rather unscientific study shows this to be far lesser. Phase 1 surgeries like tonsils removal, adeneoid removal are no longer considered by Dr. Li unless the patient has large tonsils or other similar indicators. In case of MMA, almost everyone improves but smaller percentage of people are completely cured. In case of many people less than 5 RDI, they still have sleep apnea symptoms (don't know why). I am so happy that things are working well for you after the MMA surgery. Hopefully you are cured for good.
ReplyDeleteBTW, the cure numbers I quote are from medical literature written by the sleep surgeons who perform the surgeries! I would argue that there is a surgeon's bias :-)
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