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Question for those who had MMA Surgery - Feeling Hopeless
#1
I'm new to this board and searched for a forum to hopefully hear people's experiences with double jaw MMA surgery.

A little history about myself: I'm 38, and ICU RN, in mostly good health, not overweight, I exercise frequently, have a lot of knowledge about nutrition and health, and was diagnosed early last year with severe sleep apnea, with an AHI of 56. As far back as I can remember I've never had restful sleep, and the past 3 years have gotten worse, waking up every morning feeling like I got hit by a train, urinating 6+ times a night, horrible memory problems, IBS symptoms, GERD, depression, all the classic symptoms and side effects of severe sleep apnea. Most of my 20s and 30s I've spent searching for a way to improve my health and symptoms to no avail. Luckily, last year I was properly diagnosed in a sleep lab and at least I was given hope, finally knowing what ails me, and after unsuccessfully trying CPAP for about 9 months, my doctor said I should get MMA surgery.

I'm now 5 weeks post-op, with much of the swelling down and more than likely moving to a soft diet next week if I'm able to get my arch bars removed. I'm not banded at all. My post op exam was promising to my doctor, and my x-rays did show some expansion in the airway, especially in my sinuses.

So here's where I seek answers and experiences from others. The day after my surgery in the hospital, I felt amazing when I woke up. I felt like I've never felt before, woke up rested, full of energy, honestly wanting to run a marathon. My doctor told me I did not desaturate once that night with my oxygen staying 95% - 100%, so it sounded like perhaps the surgery was successful in curing my apnea. I went home that day and for several days I woke up feeling amazing, elated, in a very good mood, full of energy. Those nights I had dreams, vivid dreams like I've never had before. In fact, I normally never dream, so this was enjoyable to me, and this, along with me feeling great and rested, feeling like a new person, I felt like perhaps I am cured and finally after a life of not sleeping, I was given a new lease on life, and I felt like conquering the world.

Then around day 5, peak swelling came in and my sleep got worse. Now, I'm well past peak swelling, and most of my facial swelling is down at week 5. However, my sleep has not improved, and in fact, feels the same as it did before the surgery. I'm back to feeling tired all day, I no longer dream, my mood is poor. I understand that I'm on a liquid diet, I'm only 5 weeks post surgery, and I won't feel my best. But, in a way, I'm in mourning. I'm mourning the loss of those few days after I felt like a new person, and I'm hoping that when all my swelling is down 6 months down the road I will get that feeling back. But, with a lot of my swelling down now, and with my struggle with sleep my entire life, I wonder why my sleep is currently the same as it was pre-op, and I'm currently short-sighted and not feeling optimistic about the final results of the surgery (hopefully a cure, but am I lucky enough to have that?).

Here's my question for those of you who have had MMA surgery for their sleep apnea:

Did anyone have the same experience as me, and how is your sleep now after surgery? Did it get worse and regress to poor sleep and then improve over time?

I'd appreciate any feedback at this time. Thank you all for your help and I hope all of you find help and gain answers to finding better sleep.
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#2
I have not heard double jaw MMA surgery talked about on any SA forum, could be around here though.
Being an RN you should know to not make big decisions while recovering from a procedure.
I have heard about post treatment bump with CPAP, walking on air for a few days because the O2 is not dropping. Usually after a few days all the little things start getting noticed. Sleeping was so bad for so long that all these little things that "normal" people take care of all the time-sleep temp, pillow, bed firmness, good sleep hygiene- start being noticed for the first time in years. They used to be small and now are big.

Heal, take care of all the little things that for so long were soo small to worry about..

You have taken a big step, take time to get used to it. Remember all the things you would tell your patients while they were recovering. There were good reasons you told them what you did
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#3
Hi Voiddweller,

You might want to do a google search with these search terms, "need sleep forum" and then find the non cpap forum in which there are a lot of discussions about the MMA procedure. Unfortunately, it isn't an active forum so you might have to do a lot of searching to find posts related to your situation.

What does your surgeon say about your current situation?

I am not a medical professional nor do I have any person experience with the MMA surgery. But I would have to agree with PoolQ's advice. Also, I don't think you can really judge the success of something like this procedure until about 6 months have passed. Easier said than done, I know.

Hang in there.

49er



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#4
Just curious, why were you unsuccessful with CPAP therapy? Given that it's a non invasive treatment versus invasive and potentially non curing surgery I would think maybe it's time to give CPAP another go as you continue to recover from your procedure.
Coffee

Happy Pappin'
Never Give In, Never Give Up


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. 
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#5
I would concur with the above post. There are several reasons why someone may not be able to adjust to the CPAP machine. I was also one who found it impossible to use the CPAP machine over the past ten years (with on again off again attempts), until the actual owner of the CPAP company met and consulted with me several times over a period of 4 weeks. Clinicians at sleep clinics as well as the doctor who specialize with sleep disorders do not have the know-how nor do they take the time necessary to deal with that 'non-compliant" percentile.

At my first meeting with my respirologist, he looked down my throat, determined immediately that I needed a BiPap machine (not a Cpap) and a different mask. 1 week later, and I was adjusted (with some minor tweaks over the next few weeks).

So stick around. Let us know what your particular problem is with the CPAP. There is a lot of collective experience in these forums, and I doubt that there is a problem that has not been discussed here.

As far as your question as to why you had those few nights of blissful sleep, here is my unprofessional opinion.

When I have a really bad cold, and my throat is inflamed, I often don't get any OA's at night. My unstudied guess is that due to the inflammation, my airway tissue (the sidewalls, etc) is more rigid, not flaccid, and therefore no collapse of the airway. Does that make sense?

Perhaps due to the swelling you experienced, the tissue is more rigid, harder than normal. Thus you slept well. Now that the swelling has gone down the tissue is back to its flaccid self, and you are experiencing OAs again. I could be all wrong, but that's my guess.

Anyway, please share specifically why your CPAP and you don't get along. Maybe you will find help here.
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#6
Hi voiddweller,
WELCOME! to the forum.!
Hang in there for more responses to your post and I hope you get to feeling better from your surgery, soon.
Good luck to you.
trish6hundred
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#7
Thank you all for your replies so far. I do understand that it is too early to tell at this point, and hoping that my follow up sleep study in 5 months will show that I am cured. Unfortunately it's been difficult finding any active forums that specifically discuss surgery to treat sleep apnea, especially MMA. Hopefully someone on these boards may discover this thread who has experience with MMA surgery, or know someone who does.

To those of you that mentioned CPAP, I just had double jaw surgery that advanced my upper and lower jaw 1cm as a way to cure my severe sleep apnea, as it opens up the airway. Prior to the surgery, my airway was the size of a straw. I am not currently on CPAP because post surgery it is contraindicated, and hopefully I won't have to use CPAP anymore when I do a follow up Sleep study. I am unable to tolerate a CPAP and struggled with it for 9 months with different settings, masks, etc. This is why I got the surgery.

Thanks all for your replies so far.
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#8
Hi Voiddweller,

You also might want to do a google search and insert these terms, "MMA jaw advance surgery blog". When I clicked on a few of the links, they seemed old. But perhaps you can find contact information for the blog owners who might respond. I realize the chances are low but you never know.
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#9
Hi there,   just wondering how you are doing now.  I'm 5 weeks out myself.. not sleeping through the night,  but what sleep I am getting seems to be fairly efficient.
Came out of surgery with somewhat of a deviated septum causing blockage on one side of nose and that doesn't help.
Just wondering how you progressed. Thanx.
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#10
I'm over 6 months out now, and my AHI went from 56 to 9, and my energy levels throughout the day are much better and I no longer need naps. Hang in there the first few months were very close to my conception of Hell. I have a deviated septum as well and used breath rite strips nearly every day, along with sudafed and nasal moisturizing spray. When I pulled out the first blood clot from my nose I felt like a new man and could finally breath.

I recall during my peak swelling period when I had no choice to breath from my mouth I had to use a few tapioca boba tea straws taped together so I could breath at night because I couldn't hold my mouth open due to the extreme swelling. 

I'm very happy with my outcome and I nearly smashed my cpap machine with a huge mallet in celebration, but instead chose to sell it. The surgery is in essence barbaric but life changing and so worth it. 

One thing I would highly recommend to you is to see a myofunctional therapist as soon as possible. They will help your new face develop properly, teach you how to breath properly, show you proper oral posture, and enhance your healing process and even help reduce your sleep apnea further. Also, be sure to take a high quality B complex and a low dose lithium supplement to aid in nerve healing, and be sure to get in enough protein and vitamins and minerals as well. I would also suggest adding in glutamine to supplement healing as well. 

In summation:

- Be patient, you will get better and your sleep with improve, but it takes months to see improvement. 5 weeks is nothing.

-See a myofunctional therapist as soon as possible to ensure the best outcome overall. Actors in Hollywood actually use myofunctional therapy to improve the beauty of their face because it improves the overall muscularity and symmetry of the face. Pretty much all the actors in the Twilight movies used this therapy, and eventually I believe it will be commonplace practice in medicine post facial and jaw surgery to ensure optimal post surgical outcomes.

-Take a high quality whole food multi, fish oil, as well as a b complex and low dose lithium (5mg) to aid in nerve regeneration. Nerve regeneration can take a year or longer.

-Sleep every night at least 30 degrees to reduce swelling and pain and aid in healing.

-Be sure to get enough high quality nutrition and take a glutamine supplement to aid in healing.

-Screw opioids, Motrin was a life saver for me for pain and swelling.

-Take all the time you need to heal and don't rush back to work. Listen to your doctor. 

-You made a good choice, but you have to advocate for your own healing and don't settle for less when it comes to your care and healing, because the healing period is loooonnnng and painful.

Good luck!
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