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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: 9172
Replies to This Discussion
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Permalink Reply by catfish44 on
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have done any research on tongue advancement or tongue reduction surgery.
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Permalink Reply by Crabby Appleton on
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Oh yeah, I forgot... I was talked into having the radio frequency treatment on my tongue. This is where they jab a probe into the back of your tongue in 3 places (L, R, center) and "shoot" waves into your tongue for 10-15 minutes in each location. The nurse holds your tongue (extended) with a towel while the doc performs the procedure. Supposedly the waves being shot (for lack of a better term) into the tongue will reduce the fat in the back of the tongue and make the airway bigger - because the tongue isn't taking up as much room. HA! This procedure is VERY uncomfortable and causes swelling that can be so bad that it closes off your airway. You're instructed to sleep (what's that?) sitting up with ice packs on your neck. Oh and the drooling is uncontrollable. I live about 20 miles from the doc's office. I held a 32 oz cup under my chin to catch all of the drool that was now running out of my mouth... we had to stop THREE times to dump the cup because it was full! The doc said he thought it would only take "10-12 more treatments to HOPEFULLY see some results". I said F that... no way was I going through that misery 10-12 more times. I've thought for years that these so-called experts are just grasping at straws to treat their "problem" patients. I want to see something that doesn't involve another radical surgery, cutting a hole in my throat, frying my tongue fat, etc. There has to be a better way.
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Permalink Reply by Sleeping Ugly on
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That a MAD won't work in "severe" apnea is not a hard and fast rule. It's just that if people are diagnosed with "severe" apnea, the inclination is to quickly get them on the gold standard treatment that is known as most efficacious: CPAP. I put "severe" in quotation marks because categories of apnea severity are extremely dependent on a number of things: night-to-night variability, sleep position, how respiratory events are measured (particularly in the case of things like hypopneas, which are scored different ways), other variables, and error measurement.
Regarding error measurement:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564784/
Basically, that article says that you can be in one category one night, in another on another night, etc. If you said you were categorized as "severe" on more than one study, by virtue of apnea events (not hypopneas, RERAs, etc.), and your oxygen level tanks, that would be compelling evidence that on a night-to-night basis you have significant apnea. But otherwise, if you were "severe" one night, it doesn't mean you are "severe" another. You could be "moderate", or even "mild". Personally, if I felt my choices were an MMA or a last ditch attempt to at treatment, I would try a MAD and I would not let the commonly held, and potentially inaccurate, view that MADs are not for "severe" apnea stop me from trying it. (I may have even read a research article suggesting that it is not the case that severe apnea does not respond to it, but I can't remember for sure.) But check out the success of MAD by having sleep studies with it in, just to be sure you are adequately treated.
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Permalink Reply by Scottsdale Sleep Center on
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We have a patient who had this surgery. It didn't eliminate her apnea and it caused permanent facial nerve pain, so now finding a mask that works but doesn't cause pain has become much more difficult.
If you are not mortified by the sawing through bone thing, I have read about a new option that is being tested that involves implanting a little "box" under the skin, like a pacemaker. The box delivers an electrical pulse that maintains some muscle tension to prevent the collapse of the airway. Here is a link: http://www.sleepreviewmag.com/sleep_report/2010-06-02_01.asp.
Have you researched other options besides jaw advancement and UPPP? I don't know much about the Pillar procedure. But here is a link in case you haven't heard of it: http://pillarprocedure.com/. Hope that helps. :)
Melinda
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Permalink Reply by Marcus Whitmore on
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Actually, MAD's DO work, it's just a matter of your definition of "works". Can a MAD take an AHI from 60 to 5?- unlikely. Can it take it from 60 to 20, or 15, maybe, or probably.
Is it helpful for an OSA sufferer to get some improvement rather than no improvement (i.e. not using a CPAP)? Aboslutely!
Marcus Whitmore
Dallas, TX
Sleeping Ugly said:That a MAD won't work in "severe" apnea is not a hard and fast rule. It's just that if people are diagnosed with "severe" apnea, the inclination is to quickly get them on the gold standard treatment that is known as most efficacious: CPAP. I put "severe" in quotation marks because categories of apnea severity are extremely dependent on a number of things: night-to-night variability, sleep position, how respiratory events are measured (particularly in the case of things like hypopneas, which are scored different ways), other variables, and error measurement.
Regarding error measurement:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564784/
Basically, that article says that you can be in one category one night, in another on another night, etc. If you said you were categorized as "severe" on more than one study, by virtue of apnea events (not hypopneas, RERAs, etc.), and your oxygen level tanks, that would be compelling evidence that on a night-to-night basis you have significant apnea. But otherwise, if you were "severe" one night, it doesn't mean you are "severe" another. You could be "moderate", or even "mild". Personally, if I felt my choices were an MMA or a last ditch attempt to at treatment, I would try a MAD and I would not let the commonly held, and potentially inaccurate, view that MADs are not for "severe" apnea stop me from trying it. (I may have even read a research article suggesting that it is not the case that severe apnea does not respond to it, but I can't remember for sure.) But check out the success of MAD by having sleep studies with it in, just to be sure you are adequately treated.
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Not to beat the drum, but please consider my idea. Wouldn't all of us prefer a non-surgical solution?
If you could see improvement in sleep, a significant improvement in AHI and RDI, etc. using a simple
dental appliance, you would choose that right? I know I would much prefer a conservative solution to losing blood (my own).
Does the fact that health insurance is not friendly to dental procedures really drive this treatment modality? Amazing.
Marcus Whitmore
Dallas, TX
Scottsdale Sleep Center said:We have a patient who had this surgery. It didn't eliminate her apnea and it caused permanent facial nerve pain, so now finding a mask that works but doesn't cause pain has become much more difficult.
If you are not mortified by the sawing through bone thing, I have read about a new option that is being tested that involves implanting a little "box" under the skin, like a pacemaker. The box delivers an electrical pulse that maintains some muscle tension to prevent the collapse of the airway. Here is a link: http://www.sleepreviewmag.com/sleep_report/2010-06-02_01.asp.
Have you researched other options besides jaw advancement and UPPP? I don't know much about the Pillar procedure. But here is a link in case you haven't heard of it: http://pillarprocedure.com/. Hope that helps. :)
Melinda
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I would be willing to try anything - short of more surgery. My issue is that I do not have medical insurance at this time and I cannot afford to pay for all of these appointments & procedures out of pocket until my wife gets out of school in 2 years and we get back to having coverage. Since my issue is largely (no pun intended) to do with my tongue, are there any OTC sort of dental appliances that could even begin to help?
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Permalink Reply by Ross Plotkin on
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I appreciate the advice, everyone. The first I ever heard of this procedure was several months ago from my ENT, who explained it, "In my lengthy career, six of my patients have gone to the jaw-being-sawed step. And they were all successful." That stuck with me, until I was independently approached by an apnea-specialist dentist at an AWAKE meeting who said, "Your unusually receded chin would make you a great candidate for orthognathic surgery. I can tell just by looking at you." I didn't see him approach anyone else at the meeting. He has been one of two sleep specialists to mention that a dental device likely wouldn't help me much.
So I am greatly distressed that so many people are shouting, "No, no, no!" I want something to fix me permanently, now. So that I never have to do anything about sleep apnea again. It pains me that the consensus seems to be, "Sorry, we're just not there yet, technology-wise. Get used to CPAP, or suffer." Not to be melodramatic, but that's like a sledgehammer to my kidneys.
The dental devices I've looked at seem awkward and unpleasant. Ever since I was diagnosed, my gut has told me that a surgical solution would be preferable. There is no surgery in existence that is 100% safe. If this procedure is so unsatisfactory, what to make of Dr. Steven Park's assessment that, "Despite these complications, the vast majority (94%) were happy with the overall results [of MMA] and would recommend the procedure to family and friends"? My bottom jaw would likely be moved 6 to 8 millimeters forward, my top jaw perhaps 2 mm, perhaps no movement at all. THIS has the potential to wreck my life?
I have an appointment with my oral surgeon on Friday, and I intend to bring this entire thread to him for point-by-point discussion. I know he is not an unbiased party, but I do feel he is honest and trustworthy about my suitability for this procedure--and not an opportunist preying on any desperate sleep-apnea sufferer who walks through his door. If he is able to refute or at least better quantify all these risks and shortcomings, why wouldn't I believe him?
And, in all fairness, if he agrees with many of the dangers with which I've been presented, I may still change my mind. I don't want to suffer for the rest of my days, but everything in life is a tradeoff. The only thing I've done so far is get orthodontic spacers in my teeth. I was cautioned that these might be very painful--but almost 24 hours later, I can barely tell they're there.
Thanks once again to everyone who has taken the time to respond, and to everyone who will respond.
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Permalink Reply by RockRpsgt on
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Is he the only Doc that you have talked to? I am very happy to hear that he has had six successful surgeries. In the grand scheme of things that is not very many. With the exception of Dr. Thomas Spawn, and Dr. Park almost every ENT I have ever talked to has opted for surgery. I think the MAD might be a good option for you to try. If it does the same thing that MMA does to a point then what do you have to lose? If it does not work then you have not lost any other options. Regardless get a second opinion on the surgery.
Ross Plotkin said:I appreciate the advice, everyone. The first I ever heard of this procedure was several months ago from my ENT, who explained it, "In my lengthy career, six of my patients have gone to the jaw-being-sawed step. And they were all successful." That stuck with me, until I was independently approached by an apnea-specialist dentist at an AWAKE meeting who said, "Your unusually receded chin would make you a great candidate for orthognathic surgery. I can tell just by looking at you." I didn't see him approach anyone else at the meeting. He has been one of two sleep specialists to mention that a dental device likely wouldn't help me much.
So I am greatly distressed that so many people are shouting, "No, no, no!" I want something to fix me permanently, now. So that I never have to do anything about sleep apnea again. It pains me that the consensus seems to be, "Sorry, we're just not there yet, technology-wise. Get used to CPAP, or suffer." Not to be melodramatic, but that's like a sledgehammer to my kidneys.
The dental devices I've looked at seem awkward and unpleasant. Ever since I was diagnosed, my gut has told me that a surgical solution would be preferable. There is no surgery in existence that is 100% safe. If this procedure is so unsatisfactory, what to make of Dr. Steven Park's assessment that, "Despite these complications, the vast majority (94%) were happy with the overall results [of MMA] and would recommend the procedure to family and friends"? My bottom jaw would likely be moved 6 to 8 millimeters forward, my top jaw perhaps 2 mm, perhaps no movement at all. THIS has the potential to wreck my life?
I have an appointment with my oral surgeon on Friday, and I intend to bring this entire thread to him for point-by-point discussion. I know he is not an unbiased party, but I do feel he is honest and trustworthy about my suitability for this procedure--and not an opportunist preying on any desperate sleep-apnea sufferer who walks through his door. If he is able to refute or at least better quantify all these risks and shortcomings, why wouldn't I believe him?
And, in all fairness, if he agrees with many of the dangers with which I've been presented, I may still change my mind. I don't want to suffer for the rest of my days, but everything in life is a tradeoff. The only thing I've done so far is get orthodontic spacers in my teeth. I was cautioned that these might be very painful--but almost 24 hours later, I can barely tell they're there.
Thanks once again to everyone who has taken the time to respond, and to everyone who will respond.
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Well said Marcus. I have seen the MAD cut an AHI in half. I have also seen it only drop the AHI by a couple of points. It all depends on how much of a factor your tongue and jaw are.
Marcus Whitmore said:Actually, MAD's DO work, it's just a matter of your definition of "works". Can a MAD take an AHI from 60 to 5?- unlikely. Can it take it from 60 to 20, or 15, maybe, or probably.
Is it helpful for an OSA sufferer to get some improvement rather than no improvement (i.e. not using a CPAP)? Aboslutely!
Marcus Whitmore
Dallas, TX
Sleeping Ugly said:That a MAD won't work in "severe" apnea is not a hard and fast rule. It's just that if people are diagnosed with "severe" apnea, the inclination is to quickly get them on the gold standard treatment that is known as most efficacious: CPAP. I put "severe" in quotation marks because categories of apnea severity are extremely dependent on a number of things: night-to-night variability, sleep position, how respiratory events are measured (particularly in the case of things like hypopneas, which are scored different ways), other variables, and error measurement.
Regarding error measurement:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564784/
Basically, that article says that you can be in one category one night, in another on another night, etc. If you said you were categorized as "severe" on more than one study, by virtue of apnea events (not hypopneas, RERAs, etc.), and your oxygen level tanks, that would be compelling evidence that on a night-to-night basis you have significant apnea. But otherwise, if you were "severe" one night, it doesn't mean you are "severe" another. You could be "moderate", or even "mild". Personally, if I felt my choices were an MMA or a last ditch attempt to at treatment, I would try a MAD and I would not let the commonly held, and potentially inaccurate, view that MADs are not for "severe" apnea stop me from trying it. (I may have even read a research article suggesting that it is not the case that severe apnea does not respond to it, but I can't remember for sure.) But check out the success of MAD by having sleep studies with it in, just to be sure you are adequately treated.
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Permalink Reply by Banyon on
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Ross Plotkin said, "I want something to fix me permanently, now. So that I never have to do anything about sleep apnea again."
For your own sake, just realize that is your attitude and that it could cause you to make a bad, irreversible mistake. I am not saying you should not have an MMA, but just realize your judgement may not be so good.
At the very least, try a MAD first.
BTW, all of us could say, "I want something to fix me permanently, now. So that I never have to do anything about sleep apnea again."
Another thing to think about is that in the next 10 years someone may invent something cheap and easy to permanently cure OSA.
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Ross, Here are some articles that might encourage you to try a MAD.
http://www.sleepreviewmag.com/issues/articles/2001-10_11.asp Conclusion: Oral appliances need not be reserved for mild to moderate OSA cases.
http://iadr.confex.com/iadr/papf09/webprogram/Paper126401.html Conclusions: Mandible advancing oral appliance seems not to be effective in reducing the AHI value in mild cases. However, it seems to be especially effective in reducing the apnea/hypopnea index in moderate and even certain severe OSA patients.
The old rule, "MADs are effective for some cases of mild OSA, but not effective for most cases of moderate and no cases of severe", may have been constructed on assumptions and zero studies.
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