[Treatment] Bimaxillary jaw advancement: I'm the freak outlier!

[Robbos]

I'm not posted much to this forum, though benefited from the advice and exchanges found here. It's one of the few web resources
that restores my faith in humanity, or at least the ability of humans to help one another in a civilized and compassionate way. 
I've decided to share my experiences with having bimaxillary jaw advancement, not as a cautionary tale or anything. Only because
it's consumed a part of my life that no one truly understands and which the medical system doesn't seem to want to help.
After a few rough years I finally got diagnosed with sleep apnea, one point below severe at 29 AHI. It was a complete and utter surprise,
as no one (yet) in my family had be diagnosed, and I was in good shape with no weight issues. So I was prescribed a CPAP, and low
and behold, like so many others, I struggled to successfully sleep with it. I'm persistent, so I went through a myriad of masks and machines,
but still, it wasn't working. It was through my own curiosity that I starting researching, and by that I mean, reading peer-reviewed medical
studies on sleep apnea that I came across bimaxillary jaw advancement as a potential cure. The statistics on 25 years of the intervention
were very promising. So I sought it out and was put in touch with a venerated dental surgeon and based on my health profile, I was deemed
a good candidate for the surgery. I was warned of the known side effects- a possibly unfavourable change in my physical appearance,
along with potential long-term loss in sensation in my mouth area, along with the arduous recovery. Knowing all this I went ahead with it, 
hoping I could eliminate (85% success rate) or at least greatly reduce (15%) the apnea that was wrecking my life. I should mention
that I've very fortunate to live in a country where this was paid for by our public health service. 
The surgery went without any hick-ups, and they decided to remove my septum and turbinates to free up breathing through my nose.
It was only after this last intervention that I realized to what degree my nose was, how shall we say, not very functional, for breathing through before surgery.
It helped, a lot. The recovery was long and not always agreeable, not surprising after having your jaws advanced by 11 mm. But after three months, I was able to start eating solids, and the swelling
 in my face was greatly reduced, letting me see my 'new' face, which, I'll admit, I was and am still not very fond of.
I felt better, I was sleeping better, I was cured!
Around four months after surgery, I started having the symptoms of sleep apnea again- headaches, loss of concentration, fatigue. It was at that point I had my first scheduled follow up sleep test. It revealed that my apnea had worsened, my AHI now was 47. I've never felt more confused, frustrated and alone. Especially as,
five years on, it is still at the same level, and I have no explanation, no hypothesis as to what on earth could do this. And, I suppose due in part
to the fact that I'm a complete outlier, no real help or follow up. I don't want to blame people, I just want to understand! To make matters worse,
an ORL recently confirmed that due in part to the surgery (plus aging) one of my sinus cavities is collapsing, making it increasingly harder to sleep with the 
nasal mask that works for me (God bless you, Tap Pap). In other words, the only positive outcome of the surgery is now failing drastically.
I've pushed back, I've dug around for answers, yet nothing. The stinger is that everydayI look at myself in the mirror and see a face I don't like, one that was modified for what end?
This is not a cautionary tale. This intervention continues to be one of the most effective methods to bring health back to apnea sufferers. What is it then?
Well, no one in my entourage has sleep apnea. No one has gone through major surgery that failed-and worsened things. I think some people here may sympathize- I don't expect anyone to respond, I'm happy just to have an outlet to finally tell a little of my story. 
The experience has taught me a bit about how the system can abandon you when there is no immediate logical explanation, and I suppose, people
want to protect themselves from recrimination. But I'll be clear, I don't think anyone did anything wrong. I think I'm an outlier, an anomaly, a freak. I think
that knowing what happened would help me to make peace and to know that other people with my profile might not suffer the same issue.
I've moved on with my life- I continue to look at new research on sleep apnea, try new things, always striving to reduce it's impact on my life. 
Kudos to those of you to come to this forum to share, support, and rally one another. 
It's an invaluable resource. 
Robin

[SleeplessInVirginia]

Thanks for sharing your experience. I also investigated surgical solutions. I had a turbinectomy, which helped a bit for a few years. I also tried the jaw positioning, but did it with a dental appliance rather than surgery (the appliance is like upper and lower night guards joined by an adjustable hinge; it pulls the jaw forward). That helped for a while but affected the jaw joint and triggered bad TMJ pain. 

Some thoughts for other people in a similar situation.  The impression I got from my own research was that the various available surgeries and appliances seem to be best suited to mild to moderate apnea. Also, they often give relief for a number of years but don't seem to be permanent solutions. People go through the expense and discomfort of these alternatives and may end up just delaying use of a CPAP.

Granted, a CPAP takes a little getting used to, and experimentation to find a mask and settings that work well for you and are comfortable. But once you have a satisfactory setup, most users get good sleep and the CPAP is welcome relief. It's also a long-term and non-invasive solution. 

Mild apnea can often be relieved with simple appliances or life-style changes (weight loss if you're overweight, sleep position, etc.), so it's worth trying those first. But discovering you have moderate to severe apnea, my suggestion is to start with an APAP and invest the time to find a mask that's comfortable and to fine-tune settings. You'll likely discover that the experience is nothing like what you might have envisioned. 

A side benefit is the data that the CPAP collects. If you have a surgery and your condition subsequently progresses to the point where apnea returns, you will again go through the slow realization that there's a problem, and diagnostics, before embarking on another solution. If you start with a CPAP, you have a sleep study every night.

If it turns out, after a thorough trial, that you're one of the few people for whom a CPAP just isn't a good solution, that would be the point to investigate alternate solutions like surgery.


But everybody is different. This is just personal opinion.

[Sleeprider]

Welcome Robbos. It seems pretty rare that surgery is the best solution. Our objective here is to explore the alternatives to avoid that. It would be nice if everyone was given an opportunity to explore bilevel pressure. It can overcome the kinds of airway resistance you describe with noninvasive air pressure.

[CPAPfriend]

hey robin,

that's a rough path to walk. I'm sorry you've had such a hard go. I'm curious to know what sort of specialist consultation you've received, if any at all, following your surgery? Did the surgeon explain to you why they believe you got the outcome you did?

I'm also in Canada and have been wading through the waters of finding a surgeon. Don't worry if you prefer not to, but I'm interested to know which surgeon and other specialists you were under the care of. There seems to be a lot of inconsistency between providers, both between providers in-country and between providers between countries.

Do you remember by any chance what movements were done? How much your maxilla came forward, how much the mandible came forward, whether they did impaction, downgraft, CCWr, etc?

I wish your life an upward trend moving forward, and thank you for taking the time to share your experiences with us here. What you did, then and now, takes courage.