"please keep me updated about oximeters "
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a lot about maxillomandibular advancement
I was told that I was a great candidate for MMA surgery (I have a "class 2" jawline and a very suitable overjet), and have been getting prepared for that procedure and its accompanying orthodontic work. I have done some research on the subject, and have been flabbergasted at what seems like results from this operation that are almost TOO good to be true.
To wit: I have not found anything to indicate any sort of lasting pain or serious complications that arise from this surgery. That's a bit unnerving. Is it really as safe/virtually pain-free as my study seems to suggest? I'm VERY worried that I will have a hard time adapting to my new mouth/jaw/tongue architecture, that my mouth will close differently and it will be odd/painful, and that after the surgery I'll just feel weird/hurt/not myself--maybe forever.
Could the sleepguide community please speak to my concerns about such? Are there resources to which I could refer? My oral surgeon and orthodontist have been very helpful and reassuring, but I highly value the input of this group.
I'm not as bothered by some that my face will be altered. I'm not Helen of Troy. I've been told by several that I may look better post-surgery. I don't care if my appearance changes and I'm not disturbed that bone will be sawed through. All of this, plus the braces, plus the jaw-being-wired-shut, plus the all-liquid post-surgery diet, is infinitely more "palatable" (pun intended) to me than any CPAP mask that will ever be created. I'm actually a bit surprised that more people don't feel that way.
I've had a tracheostomy suggested to me. That sounds worse, more antiquated; and even if it is reversible, won't there always be a huge scar on your neck? And an actual gaping hole for all to see? I read that Steven Hawking lost his voice from a similar procedure.
I understand that many are optimistic that a more tolerable treatment than CPAP is just a few years away. I am not. I don't think MMA is a quick fix, but I've been terribly attracted to it ever since it was proposed. What I've worried about is permanent pain, permanent scarring, permanent disfigurement. Those would not be good. Everything else I could make my peace with if it was part of the package deal of being able to sleep properly.
I've been told that a conservative figure for this operation's success, at least in my case, is 80%. That's much better than a UPPP. I've been told that at 62 apnea per hour, I am too severe for a dental appliance. I do plan to once again try and find that magic CPAP mask that will work for me in the months my teeth are being addressed. But MMA seems like the best long-term option. A lot of people recoil when I explain to them what the procedure entails. I wish they wouldn't do that.
To wit: I have not found anything to indicate any sort of lasting pain or serious complications that arise from this surgery. That's a bit unnerving. Is it really as safe/virtually pain-free as my study seems to suggest? I'm VERY worried that I will have a hard time adapting to my new mouth/jaw/tongue architecture, that my mouth will close differently and it will be odd/painful, and that after the surgery I'll just feel weird/hurt/not myself--maybe forever.
Could the sleepguide community please speak to my concerns about such? Are there resources to which I could refer? My oral surgeon and orthodontist have been very helpful and reassuring, but I highly value the input of this group.
I'm not as bothered by some that my face will be altered. I'm not Helen of Troy. I've been told by several that I may look better post-surgery. I don't care if my appearance changes and I'm not disturbed that bone will be sawed through. All of this, plus the braces, plus the jaw-being-wired-shut, plus the all-liquid post-surgery diet, is infinitely more "palatable" (pun intended) to me than any CPAP mask that will ever be created. I'm actually a bit surprised that more people don't feel that way.
I've had a tracheostomy suggested to me. That sounds worse, more antiquated; and even if it is reversible, won't there always be a huge scar on your neck? And an actual gaping hole for all to see? I read that Steven Hawking lost his voice from a similar procedure.
I understand that many are optimistic that a more tolerable treatment than CPAP is just a few years away. I am not. I don't think MMA is a quick fix, but I've been terribly attracted to it ever since it was proposed. What I've worried about is permanent pain, permanent scarring, permanent disfigurement. Those would not be good. Everything else I could make my peace with if it was part of the package deal of being able to sleep properly.
I've been told that a conservative figure for this operation's success, at least in my case, is 80%. That's much better than a UPPP. I've been told that at 62 apnea per hour, I am too severe for a dental appliance. I do plan to once again try and find that magic CPAP mask that will work for me in the months my teeth are being addressed. But MMA seems like the best long-term option. A lot of people recoil when I explain to them what the procedure entails. I wish they wouldn't do that.
Views: 9236
Replies to This Discussion
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Permalink Reply by Tim on
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I have had surgery that included MMA, and it has caused problems. My lips and portions of my mouth are permanently numb because the stretching of the nerves has permanently damaged them. My surgeon warned me before surgery that nerve damage to varying degrees does happen quite frequently.
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Permalink Reply by Mike on
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Ross,
I know that we've had private correspondence on this which is old news to you (and which you've referenced in your post above) but I'll include it below for the benefit of everyone. I also have a new thought to add: have you had a skilled ENT do a nasal/ larynx endoscopy to determine whether a more conservative surgery would help at all? If not, I'd talk to someone like Dr. Park about that -- he's an ENT.
Mike
"Ross,
Definitely ask this question publicly on SleepGuide. You owe it to yourself to get as much info as possible before this dramatic surgery. Right off the bat, check out everything ever posted by "sha": http://www.sleepguide.com/profile/sha , including her before and after photo album from the MMA surgery (which she had done by Kasey Li at Stanford, the world's pre-eminent specialist on just this surgery -- you might fly out to the Bay Area just to see him -- seriously. consider it) http://www.sleepguide.com/photo/albums/mmagasurgery-for-sleep-apnea
Right off the cuff, i would tell you, personally, I would not myself undertake this surgery. it's way too intense and scary and permanent for me. If i were really at my wit's end, i personally would have a tracheostomy before the MMA. It's dramatic but 100% effective -- it's the only "Cure" for Sleep Apnea. Honest. The only one. And it never fails. Never. Plus: it's easy to do and totally reversible. Sounds like a good combination to me.
The MMA on the other hand . . . well, it's re-jiggering the structure of your face. Period. That's HUGE. too scary for me. What if something goes wrong? OSA treatment is evolving so quickly, that i would rather buy some time with the ugly but reversible trach than go down the road of the irreversible and complicated MMA surgery.
My thoughts, for what they're worth. Take it with a grain of salt as you would info from any source, and get more info. I'm happy to continue discussing with you anytime.
Mike"
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before i forget, you should send a message to Dr. Mack Jones: http://www.sleepguide.com/profile/MackDJonesMDSAAN
He is a physician who has been through the gamut of Sleep Apnea surgeries, and who had the tracheostomy and is living with its results every day. He's very open and generous with his time talking about this subject. I'm sure he'd give you some good advice.
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BTW, I have had both an MMA and a UPPP -- and I neither of them helped enough to stop using CPAP; I still have severe OSA.
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Permalink Reply by MARIE G. on
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MARIE G. said:MARIE G. said:MARIE G. said:Hi there,
Most of us mma surgery patients post on the website www.sleepnet.com - specifically look under the "non-cpap options" portion under the sleep apnea section of the public forums. Also check out the "Ask a Sleep Surgeon" column by Dr. Kasey Li. He is a renowned surgeon who answers questions on the mma surgery. You can also check out his website www.sleepapneasurgery.com for patient experiences on the mma surgery. Have you done a google web search for mma surgery blogs - several people have written blogs chronicling their surgery. I personally had the mma surgery this past jan. and it has been truly life-changing. It was painful as expected, but the pain was easily controlled with pain medication. I actually think my appearance has improved since I had a receding chin beforehand. the tip of my nose is a little flatter and downturned. Most people don't even notice the changes. I had two small scars at the sides of my cheek that disappeared after a few months I did have lip/chin numbness which is expected to go away after a year. Overall, I consider myself very fortunate to even have been given the opportunity to have this surgery. But the hardest part of the recovery process is that it is long, slow and boring - you will be unable to talk/eat solid foods for approx. 6 weeks after the surgery. After that, you can't talk too much and you must keep eating soft foods. I think hardest part for me was the expectation issue: Don't expect your sleep to improve overnight, it's been 6 months since my surgery and I'm still having sleep problems since my sleep has been so messed up for so long. It can take as long as a year until you start sleeping better. I feel significantly improved from my pre-surgery state and would do the mma surgery in a heartbeat. Now that it's over I hardly think about it and like you I was quite apprehensive. May I ask who is performing the surgery on you? MMA surgical success is highly dependent on the surgeon performing it.
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I would immediately go see a board certified sleep physician that is not an ENT. In my 12 years in sleep I have seen people that have had this surgery and lost their taste buds, facial distortions, lips tingling constantly. I would duct tape a cpap mask to my face before I would have this surgery. I would seek a qualified sleep physician and seek a proper titration on cpap. You may end up needing a Bipap or AutoSV (a qualified physician will know what you need). Seek out a good DME company in your area (you have a choice in where your cpap script is sent to).
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Permalink Reply by catfish44 on
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i don't know if you have totally given up on CPAP . i assume you are a mouth breather. there is a mask called the TOTAL FACE mask made by respironics/phillips. it has no forehead brace nor does it touch the bridge of the nose. it can be viewed on CPAP.COM along with other sites.
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Permalink Reply by RockRpsgt on
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I do not really have anything to say on this. I have never dealt with anyone outside of SG whom has had this surgery. I have researched it extensively. My view on it goes along the same as Mike and jnk's. I prefer to treat my sleeping disorder at night when it happens. Due to what I have heard and read about this procedure I think I would prefer the trach if my hand were forced. I have heard too many stories about people having this done and still having apnea. If I were to go through a major surgery like this I would want to be 100% positive that the apnea was going to go away.
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Permalink Reply by Marcus Whitmore on
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Ross,
Have you been fitted for, and tried to wear a dental appliance?
Do not, I repeat do not consider surgery until you have tried a dental appliance, MAD (mandibular advancement device). The same thing happens anatomically while you are wearing the mouth appliance as mandibular advancement, only when you take the appliance out, the jaw and tongue return to your
natural position.
In fact, a surgeon should not even attempt such advancement surgery before trying an appliance, to see if advancing the jaw and associated structures helps with the OSA. Consider that, please.
My own preference in dental appliances is the Somnodent. Check out these links http://www.planodental.com/14/stop-snoring
and
http://www.somnomed.com/For_Patients/What_causes_OSA_.aspx
for further explanation.
Please respond to me privately as well with questions.
Marcus Whitmore, DDS
Dallas, TX
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Permalink Reply by Amy on
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I have had a few patients who have had the surgery and then still needed cpap. I think Marcus's suggestion is a good one. An oral appliance will give you an idea if there is an improvement from the advancement. Just make sure you use a dentist who either has extensive experience or who is boarded in sleep dentistry.
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Permalink Reply by James Skinner on
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You may find the info in the following Dr Li interview by Dr Park useful on this topic. MMA Discussion
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Permalink Reply by Crabby Appleton on
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I had the "gold standard" treatment about 13-14 years ago when I was around 35. I had the UPPP. They cut out my tonsils, adenoids, uvula and trimmed the palate. It was the worst pain I've ever had in my life... and I've had kidney stones 7 times. The surgery did nothing to help my breathing. I do not snore as bad, unless I get on my back. The problem is, I have a huge tongue. All the surgery did was open a big hole in the back of my throat for my tongue to fall into when I drop off to sleep. I've used every kind of mask you can think of. I'm so frustrated that I could scream. I haven't slept for more than 2-3 hours a night for years. I'm positive this will be what kills me. I'm not letting anyone cut my jaw and reposition it. That will just lead to further problems. The issue is my tongue falls into this surgically-created hole and no amount of air pressure can push the airway open. I've had my fill of "great ideas" to remedy this issue.
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