I know I have functional problems, but do I LOOK like a could use surgery?

[face_backward]

Hi folks,

After lurking intensely for a couple of weeks, this is my first post.  I'm a late-20's guy, 5'9" 175 lbs, in reasonable physical shape, struggling to finish a graduate degree, with a slightly odd-looking face and a lifelong history of gradually-worsening depressive/spaced-out/fatigue symptoms.  I am coming to believe that these symptoms are mostly the result of poor sleep breathing, and that the poor sleep breathing is rooted in the shape of my face and jaw (I'm pretty confident on the first claim, less so on the second).

PICS

Here's a lateral ceph, which I got at a recent orthodontic consultation:

http://i.imgur.com/eFVTEHk.jpg

And here's a profile:

http://i.imgur.com/AUQSvYz.jpg

and a head-on:

http://i.imgur.com/bONDCFM.jpg

Functionally:

My untreated sleep quality sucks, and as far as I can tell has always sucked.  I snore/snort/gasp/"rattle" in my sleep loudly enough to wake others (but not myself) and have recently concluded that I have mild apnea/UARS (though despite several tests I can't seem to get a formal diagnosis, for frustating reasons involving my inability to sleep representatively under observation -- worst observed AHI was 10 with minimum O2 saturation of 85%, but it "didn't count" for diagnostic purposes). "Refreshing sleep" is not something I remember ever having experienced more than a few times before the past few months. 

The sleep problems are partly alleviated with a jaw advancement splint (which I built myself because none of the medical people I talked to seemed interested in pursuing this after the first OSA-negative sleep study).  It turned out that holding my jaw/tongue forward while I slept was better than taking the amphetamine which I got for my diagnosis of "inattentive ADHD" (I've also been diagnosed with unhelpful bulls**t like "persistent depression" and "idiopathic hypersomnia").  This jaw-advancement discovery was what got me thinking about my facial skeleton.

I bought myself a CPAP machine recently and I'm still experimenting with it, but no matter how I set it up it doesn't seem to help as much as holding the jaw and tongue forward does.  It's hard to make it through a full night while using any of these uncomfortable interventions -- sleep quantity vs quality is a hard tradeoff that I haven't yet overcome.

Bite is fine, chewing is fine.  I have all 32 teeth, and only one has any major issues (lower right wisdom tooth is crooked).  I have never had orthodontic work, and am not prone to tooth decay (though I have some damage from nocturnal bruxism, probably related to the sleep breathing problem).  I don't have any noticeable soft-tissue abnormalities in my mouth, besides slight enlargement of the tonsils and a fairly large tongue.  I am somewhat prone to sinus problems, but I can usually breath through my nose alright (though I always breathe through my mouth at night unless I tape it shut).  I have a deep voice for my size, and I speculate, from my incomplete understanding of the pharyngeal anatomy, that the corresponding position of the larynx doesn't help with the airway patency. 

Besides the sleep problem, I have some other minor jaw-related functional issues:

- Left TMJ pops (painlessly) every time I open my mouth more than an inch.  This seems to be the end of the jawbone actually popping out laterally, not just a disc displacement internal to the joint.

- Minor lip incompetence, which I can usually compensate without excessive mentalis strain, but probably contributes to my loss of lip seal and mouth falling open during sleep.
   
- My typical head/neck posture sucks, despite prolonged efforts to improve it. Partly it's because I'm slouching from being tired all the time (see above) and partly because standing more upright sucks my jaw uncomfortably far into my neck. 

In my own assessment, I also have some jaw-related

Aesthetic issues:

- My chin seems fairly weak -- indeed, the projection is short enough beyond my neck, and sufficiently angled up, that I cannot comfortably strap on a bike helmet without impinging on my neck.

- Though I am obviously not blessed with strong beard genes (I'll take the not-balding genes instead) I am consistently told that I look worse (or "like you're 12") when I shave.

- There is a minor but noticeable-from-the front asymmetry of the lower jaw.  Ortho observed that lower incisor midline was offset from upper incisor midline.  This may just be may a dental issue, however. Sometimes by biting hard on incompressible material between the right molars, I can make the right TMJ pop, and after that I can open my jaws without popping on either side for a few hours. My face is noticeably more symmetrical when this happens, but it soon relapses into asymmetry and the left joint starts popping again.

- My nose sort of turns up at the tip.  I usually see this feature in *after* profiles from linear bimax advancement, so I assume a linear bimax would make that worse.

- I have relatively flat cheekbones/weak suborbitals,, but I'm not really concerned about that unless inasmuch as it would make any advancement of the jaws look apelike.  I do think my skull looks a little strangely apelike already on the ceph.

- I barely show any teeth when I smile, as though the teeth are not pushing out from behind the soft tissues far enough.

My self-analysis at this stage:

I strongly suspect the known functional issues (sleep, TMJ, head posture) are related to shape of the face bones themselves, but I've been wrong hundreds of times before and I could easily be wrong with this too. Maybe if I cut away at the tonsils or soft palate I'd sleep better, but I sort of doubt it.

I'm under no illusion that I am deformed.   I don't want to be one of those unreasonable people saying they need the kitchen sink when it's clear to everybody else that they're making mountains out of molehills, so please check me right now if I "actually look fine", I'll believe you (almost).  The orthodontist I recently consulted didn't see anything abnormal about my profile, occlusal plane angle, or bilateral symmetry -- however, to my eye, photos of many of his other "successful" patients showed pretty goofy skeletal structures.

It just strikes me that there's room for improvement aesthetically, and it would be great if the form and function could be improved together.

On the ceph, I measure the angle between the Frankfurt horizontal and the bite plane (at level of premolars) to be about 17 degrees, which I take to be a bit outside the normal range, but not extreme.  I'd say the steep occlusal plane angle does not mainly reflect excessive anterior facial height -- in that case, I would expect excess upper gum show (actually have incomplete upper tooth show) and straight or humped downturned nose (actually have upturned nose).  On the contrary, I think the steep plane is a more a result of deficiency at the rear of the maxilla, and corresponding deficiency of the mandibular ramus height
(though with this flat gonial angle, the ramus is barely distinguishable from the mandibular body).  I suspect the deficiency in the posterior face/jaw might be what's cramping the airway.

I think my lower jaw needs to rotate CCW a little and come forward to get a jawline and some chin projection, but I can't see how to move the upper jaw forward much without pushing the already-prominent and upturned nose even further up and out.  I certainly wouldn't want to impact the anterior maxilla and lose my teeth entirely behind my upper lip.

Maybe downgraft the anterior maxilla slightly and the posterior maxilla significantly?  I don't know, I suppose that could make the lip incompetence worse.

On the "face" of it, does this look like a potential jaw surgery case at all?  Should I email some photos to Arnett/Gunson or something?  Or am I completely barking up the wrong tree?  I'm pretty sure that straight linear bimax would be aesthetically worse, even if it were a functional improvement.

Thanks for reading, I know this was long.

[emanresu]

Sorry I don't have much to add here (you seem to have a pretty good analysis), but I would book some appointments with a few maxfacs to see what they think. Also, I have read that people who practice proper tongue posture have noted improvements in sleep quality, perhaps seek out a myofunctional therapist if you are having trouble maintaining proper posture during the night.

[dammit_daniel]

Did you end up seeing a surgeon?

[face_backward]

I have not seen a surgeon, but my sleep doctor is referring me to Stanford sleep medicine, where hopefully I can at least get somebody to acknowledge the functional problem -- I still haven't even been able to get any diagnosis, possibly because the facility I go to is not really equipped to identify UARS. 

I'm not very hopeful at this stage of anything usefully moving forward, but I believe my best chance to convince a surgeon to do something, and to convince insurance to contribute to doing it, is if I actually had some kind of sleep-disordered breathing diagnosis, and if Stanford (where the diagnoses of OSAS and UARS originated) can't figure that out, nobody will.

Since I'm pretty sure the jaw is source of the sleep problem, I've already tried every non-surgical treatment for sleep apnea without lasting success, and my life is effectively over if I don't make this improve (there's no way I can hold a job with the level of fatigue I experience untreated, and all the treatments have been unreliable at best), I'll still probably try to see a surgeon even if Stanford doesn't come through diagnostically (like if I'm unable to sleep representatively in their lab). 

Of course, I'd have no way to pay for what would need to be done in that case, so I'd be SOL anyway. 

[kavan]

Your face really does not look that much backwards to an extent that one would choose that screen name. However, aesthetically, I think a more forward lower face with chin would suit you well especially given the sleep apnea.

From your X rays, it does look like they could do MMA (bi max, linear advancement where both jaws are equally advanced) which is kind of the easiest thing some maxfax docs, especially the ones with insurance paying for it, want to do for sleep apnea. However, some aesthetic trade-offs with that is look of 'longer' lip or more exaggeration of high mandibular plane from the front.

Not saying that the linear advance MMA would look bad on your or anything like that but just look for a doc who has the option of CCW (counter clockwise rotation) which would tend more toward offsetting the potential aesthetic disadvantages of MMA.

[face_backward]

Update:

About a week ago, I finally managed to construct a jaw-advancement/tongue-holding device that seems to reliably improve my sleep and daytime symptoms.  Not the best ever, but works every day.  This was the kind of evidence I had been looking for in order to be fully convinced that this jaw-based sleep-breathing thing really has been the source of my problems, in spite of all the treatment failures and inconsistent test results in the past.

Also, I just got back from Stanford sleep medicine, where I made my case to the trainee doctor I got to see.  To my complete amazement, he left and came back with Dr. Guilleminault -- The Dr. Guilleminault who first proposed the diagnoses of sleep apnea and UARS, and without whom the whole field might not exist.  I didn't think he was even practicing anymore -- he's been a doctor since my parents were in kindergarten, so he's absolutely ancient now.

So here's this godfather of sleep medicine, a guy whose textbook chapters I'd read to learn about my condition, and he's actually there in person looking in my mouth and examining my ceph.  He agreed that my jaws are retruded, and initiated a referral to a sleep surgeon, Dr. Kasey Li, for evaluation -- with the caveat, of course, that nobody would operate until I had a positive sleep study (scheduled another one for the end of August), but said it was possible that I would be a candidate for MMA even with UARS/mild apnea.

Highlights from exam notes:

Oral:
High & narrow hard palate: yes
Elongated soft palate/uvula: no
Mallampati score: 4
Tonsil size: 1
Malocclusion: Class 2 modified by oral appliance
Edge to edge
Crossbite: yes
 
Craniofacial:
Maxillary deficiency: yes
Retrognathia: yes
Micrognathia: yes

Physical examination consistent with small retrognathic airway that definitely place him at risk for sleep breathing disorder. We will reevaluated him with new sleep study and referral to Dr. Li will be place for evaluation of airway anatomy that could account for his symptoms.

That's the good news.

Bad news: said godfather of sleep medicine told me that I had to stop using the oral appliance, which I have finally gotten to work reliably, and which is the only thing that's ever helped, in favor of resuming CPAP, which has never helped much and always had intolerable side effects.  He didn't like that my bite has become edge-to-edge from using the jaw advancement.  I'm certain (based on the fact that current, professionally-made dental casts can be made to fit together correctly, and also reproduce my malocclusion when the lower cast is pushed forward) that the edge-to-edge bite reflects a change in jaw posture (the nightly advancement has become residual during the day, possibly through remodeling of the jaw joint), whereas he seemed to think it was a matter of tooth movement.  We seemed to have some miscommunication about this.

I'm worried now that since my jaw posture is noticeably further forward after using appliances for a year, and can no longer be pushed back to its original fully-retruded position, my untreated sleep breathing problem may not appear, on the next test, bad enough to operate -- even though it can only be as good as it is in the context of a device-induced malocclusion.  Very frustrating.

 

 

 

[kavan]

Aesthetically, I think you would benefit from a sliding genio to advance out and shorten the chin. Often this has some improvement to the airways.

IDK. So what if your bite became edge to edge if your airway is still too small. Like someone could have an edge to edge bite anyway as a start point whether or not a device 'did it'.

Maybe consider using the CRAP (mispelling intended) device with the NOSE PILLOWS and just telling them that you 'no longer' use your own device. Who knows? Maybe the pros just BRISTLE when a patient does something to improve thier own breathing and didn't go through a dental pro to do it.

Do you think he would have said what he said if he didn't know you made your own device?

Consider that you STILL have indication for the whole surgery despite your moving your jaw or teeth a tad forward.

I know it sucks when all is contingent on insurance paying for it.

[face_backward]

Aesthetically, one of the worst parts is that when I stand up fully straight and look straight ahead, I have a double chin and no jawline at <15% body fat.  This is usually concealed by my terrible neck posture, but is immediately corrected by protruding my jaw.  Sliding the chin only, without the rest of the jaw, seems like it would just put my "first chin" further ahead of my "second chin" without actually resolving the double-chin/no-jawline issue.

I know the device did cause my edge-to-edge bite, because I didn't have it before.  It should still be *less* of a problem for a surgeon than a "natural" edge-to-edge bite would be, because I can demonstrably still fit the arches together into a normal interlocking occlusion if they're isolated and free to move relative to each other -- the way they would be if my jaws were sawn off.  I get that it could become a problem if the surgeon couldn't "find" a stable occlusion to fit the loose parts together in, but that's a non-issue in this case, so I don't get why he was so bent out of shape over it.  At worst, the surgeon would end up fitting the pieces together in way that made a minor forward dislocation at the joint permanent, which doesn't seem like a huge problem -- my TMJ is better with the minor forward dislocation than it was with the old occlusion.

Regarding medical advice -- I actually did try going through a dental pro some months ago.  I paid one out of my own pocket to make me an oral appliance after my attempts had been unreliable, figuring maybe the unreliability was because my craftsmanship just sucked and a pro could do it better (particularly with respect to incorporating tongue-holding along with the jaw advancement).  Turned out the pro's device wasn't any better for me than mine were, so I went back to making my own, and ended up improving on it.

I don't think whether or not I had done it myself or with a dentist's approval would have had any bearing on this sleep doctor's opinion of it, though.  I think what we had here was the typical combination of

(1) misaligned incentives -- doctors care more about measurable/objective problems, patient cares more about subjective symptoms/quality of life, and when these trade off to suggest different treatments, doctor and patient have conflict of interest.
 Also, the level of risk I'm willing to take with myself while accountable to myself, to fix a problem that's nearly driven me to suicide, is always going to be higher than the risk a doctor is willing to take with somebody else while accountable to his colleagues. Closely related,

(2) asymmetrical information -- doctor knows more in general, patient knows more in specific.  Especially given that this doctor was a celebrated expert with a lifetime of experience, he had little time for the details of my case (getting some of them objectively wrong in his statements to other people), but knew (correctly) that he knew better which type of treatment works better for most people.  He has to assume I am more like most people than I say I am (including being about as ignorant as the average person), and he doesn't have the benefit of the fine-grained knowledge I have acquired from my own observations.

Which means when I say I'm doing something weird to treat a problem that I can't objectively demonstrate, and the treatment is visibly messing me up, the doctor is pretty much obligated to say I should stop using that treatment in favor of a more common and less objectively damaging approach, even if that approach subjectively doesn't work for me. 

I get why he has to tell me to do it, doesn't mean I'm going to.  I'll give it another shot, but I have to do what works most of the time.  Last night I tried CPAP again and didn't even make it 3 hours total -- I tore it off my face twice.

[kavan]

Do you use the nose pillows or the mask?  If the latter, try the former and see if that is anymore comfortable.

[face_backward]

I do use nose pillows, I have two kinds of nose-pillow masks, including a dreamwear and some minimalist one that's basically nothing but the nose pillow and some straps around the back.  I learned to put pads in front of my cheeks under the straps or the pillows push too hard into my nose and limit the air flow by scrunching it up (loosening the straps instead just makes it leak). 

Still, I can never manage to stay asleep with the damn thing longer than 5 hours tops, and if I ever set inhalation pressure higher than 10 I reliably wake up with my stomach and guts filled with air.

[ditterbo]

Having tried CPAP for a few months as well, it's funny what alluring and luxurious names manufacturers give their CPAP masks even though they're typically no better than the last one a patient's tried, all told, save for your facial features meshing better with a particular shape.  Too bad insurance doesn't really cover custom designed masks.  Hell it took me a week+ just to get used to sleeping with a smartwatch on my wrist. I don't get how you can mess with inhalation pressure, that must be unique to your machine. Mine was set by the doctor.  But the air problem is something you get accustomed to and resolves over time, IIRC.

[bex]

Regarding medical advice -- I actually did try going through a dental pro some months ago.  I paid one out of my own pocket to make me an oral appliance after my attempts had been unreliable, figuring maybe the unreliability was because my craftsmanship just sucked and a pro could do it better (particularly with respect to incorporating tongue-holding along with the jaw advancement).  Turned out the pro's device wasn't any better for me than mine were, so I went back to making my own, and ended up improving on it.

I don't think whether or not I had done it myself or with a dentist's approval would have had any bearing on this sleep doctor's opinion of it, though. 

Sharing my two cents, as I just had bimax surgery + genio and suffered all the same symptoms you described (albeit to a greater degree, but trust me - this gets worse the longer it's untreated).

Yes, you might be right on both misaligned incentives/information BUT your doc's disproval of the homemade oral device is also for your benefit. If you're trying to get this procedure covered by insurance (I did), you will most likely need to prove that you exhausted all other treatment options, including CPAP and an oral device. And you will need official documentation proving that these treatment options failed. No doctor is going to provide you that documentation for a homemade device. If you're seriously considering this procedure and don't want to pay out-of-pocket, then I'd go back to using the dental pro's device and do what you need to do to get documentation to show that it's not an effective treatment for you. Same goes for CPAP (I'd actually prioritize this, as most sleep doctors consider this to be the gold standard for OSA and you WILL need to prove non-compliance to get your surgery covered).

[face_backward]

And you will need official documentation proving that these treatment options failed.

If you're seriously considering this procedure and don't want to pay out-of-pocket, then I'd go back to using the dental pro's device and do what you need to do to get documentation to show that it's not an effective treatment for you.

I'm sure I can't do that, except insofar as "documentation" is "somebody else writing down the words coming out of my mouth".  I know I won't be able to show objectively that current treatments aren't good enough.  I can't even reliably show objectively that I have apnea when I'm untreated. Using the dentist's device, I'll probably look pretty well treated on any test on most nights.  It is subjectively pretty good, occasionally.  I just strongly suspect it could be better, more reliably, if there was more space in the airway to begin with.

I'm getting the sense that while I might be able to convince a surgeon to operate for this (as long as I can eventually show that I actually have apnea during a lab test, and show that I am otherwise a good candidate for surgery by being young, normal-weight, having clearly-retrusive jaws, etc), I'll never get insurance to cover it because the apnea will

(a) never look objectively "bad" enough even untreated (low AHI), and

(b) appear to be "resolved" objectively with the non-invasive methods I've already used, even though the subjective quality of that resolution is very hit-or-miss

One of the most frustratingly no-win parts about this whole affair has been that in light of the inconclusive sleep study results, I've had to make my case that I have a sleep-breathing problem at all by arguing that at least some of these breathing interventions subjectively do help me a lot.  But now to make the case that anything more should be done, I might have to prove that they objectively don't help me enough.  I don't think that can happen.

What really grinds my gears though is that with my degree, I could actually get a job that would make me enough money to pay for this procedure out of pocket in a reasonably short time, and I would not hesitate to do that work to save that money, but I'd only be able to hold such a job if the symptoms could be reliably resolved now, and I don't think that's going to be possible without this procedure. 

My last shot would be if my parents could loan me to pay for it out of pocket, which I think they might actually be up for.  But that's absolutely a last resort.  And there's always the chance that I'm wrong, and that I borrow a tremendous amount of money to do something that doesn't fix the problem and doesn't actually enable me to hold a job that could ever pay it back. 

Personally, I'd gladly bet my very life on such a procedure being a success (indeed, I'm already in the position of betting my life on it, because I can't keep living like this and I've tried everything else) but I get that this isn't going to convince anybody else to spend their hard-earned money on it.


@ ditterbo,

I don't get how you can mess with inhalation pressure, that must be unique to your machine. Mine was set by the doctor.

My understanding is that there is always some machine-specific "secret code" that the provider enters to adjust the settings, and which isn't supposed to be given to the patient because [bulls**t].  On my machine (respironics system 1) if you select "settings" on the screen and then hold down both of the two buttons on the machine simultaneously for a few seconds, the "secret menu" will come up that lets you change the pressure and whatnot.  Try googling "[your machine here] provider setup" or some such -- at your own risk, of course.

[bex]

I'm sure I can't do that, except insofar as "documentation" is "somebody else writing down the words coming out of my mouth".  I know I won't be able to show objectively that current treatments aren't good enough.  I can't even reliably show objectively that I have apnea when I'm untreated. Using the dentist's device, I'll probably look pretty well treated on any test on most nights.  It is subjectively pretty good, occasionally.  I just strongly suspect it could be better, more reliably, if there was more space in the airway to begin with.

I'm getting the sense that while I might be able to convince a surgeon to operate for this (as long as I can eventually show that I actually have apnea during a lab test, and show that I am otherwise a good candidate for surgery by being young, normal-weight, having clearly-retrusive jaws, etc), I'll never get insurance to cover it because the apnea will

(a) never look objectively "bad" enough even untreated (low AHI), and

(b) appear to be "resolved" objectively with the non-invasive methods I've already used, even though the subjective quality of that resolution is very hit-or-miss

I'm confused. You demonstrated an AHI of 10 and min oxygen saturation of 85% - what about this "didn't count," as you say?   And why would you have an issue getting documentation from a doctor to show that other (physician-approved) methods are not helping? If all this were true and you meet any other requirements for surgical intervention as outlined by your insurance company's policies, then have your doctor file an appeal with your insurance company. Yes, this requires a lot of work on your part, but in my experience, it was more than worth it to not have to pay $100k out of pocket.

[face_backward]

The recording of an AHI of 10 and min O2 sat of 85% didn't count because it was only an at-home overnight oximetry, not a full "at home sleep study" -- i.e., I wasn't wearing the chest strap and nose-air-flow sensor to verify that these were actually obstructive events/breathing disturbances.  I don't know what the hell else they would have been, except instrument malfunction, but for purposes of officially diagnosing OSA they need to see that the blood desaturations are accompanied by measurable air-flow abnormalities. 

I was given a full at-home sleep study after this positive oximetry, to confirm the diagnosis.  During that confirmatory study, the problem basically didn't show up, just like it hadn't during my in-lab study (when I barely slept at all). 

The trouble is that there are two things that seem to resolve this problem for me, in terms of making the nighttime breathing irregularities stop and making me feel better the next day: jaw advancement, and being really amped up nervous/anxious/insomniac before I go to sleep.  Like, I'll conveniently always feel my best the day of a big exam or job interview, despite having had what most people would call a pretty terrible night's sleep (light, fragmented. long periods of wakefulness) before.  I think it has to do with not reaching such a deep stage of sleep meaning that my airway muscles don't relax as much.

Unfortunately, this effect is usually happening during my sleep studies too, and making it look like the problem is least bad during the times that it matters most that I demonstrate it.  Knowing that my sleep is being observed to determine whether I'll ever get treatment makes me nervous, so I sleep an uncharacteristically short time, wake up uncharacteristically many times during the night, and feel uncharacteristically great in the morning -- and then extremely pissed-off that I again "failed" to demonstrate the problem.

For my upcoming in-lab sleep study at Stanford at the end of the summer, I'm planning to have somebody help me stay awake (without stimulants, of course) for 40+ hours before the study, so that I'm physically incapable of not sleeping deeply when I'm being observed.