Author Topic: I know I have functional problems, but do I LOOK like a could use surgery?  (Read 5633 times)

bex

  • Newbie
  • *
  • Posts: 28
  • Karma: 5
Got it, that makes sense. Well - of the three tests, the overnight oximetry is likely the least exact/accurate, so I wouldn't necessarily put too much stock in that being the correct result.

That said, it sounds like you have UARS, and hopefully this test will finally be able to determine whether that's the case.

I've also experienced what you've described (re: feeling better on the days that you had a s**tty sleep), but I chalked it up to 1) adrenaline and 2) feeling better with less sleep because I was deprived of less oxygen. If I'm not sleeping, I'm not slowly suffocating myself.

Can you ask about taking a sleep aid before the study? It's my understanding that that's fairly common practice.

kavan

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 4029
  • Karma: 426
It just sounds like you are able to WILL a good nights sleep WHEN you want to have one, can self assist in pushing out the jaw with your self made device and don't have the type of apnea episodes they are looking for in order for insurance to pay for it.

In terms of your LOOKS, you don't look double jaw recessive and your looks would benefit from an advancement genio, which, who knows, might help the at night breathing.
Please. No PMs for private advice. Board issues only.

kavan

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 4029
  • Karma: 426
Heads up on possible 'MONKEY'S PAW'.
« Reply #17 on: June 11, 2018, 10:51:01 AM »
Dude, I think you should be careful about trying to rig a situation where insurance pays for double jaw surgery IF your main or even most of the objective is actually AESTHETIC improvement.

In terms of aesthetics ONLY (remember you are on the aethetic section of the board),:

 1: your jaw angles are HIGH

 2: your jaw to jaw distance could be wider

 3: your chin is long

 4: your UPPER jaw looks forward enough

 5: you have the type of nose that would tend to get wider at base with upper jaw advance

 6: you still have your lower jaw WISDOM teeth.

 7: your bite looks right
-------------------------------
If insurance does find an indication to do the surgery to increase the airways, they MIGHT just be tempted to give you MMA, basically LINEAR advancement of both jaws equally. Your case looks pretty tempting for them to do just that. Tempting as that may be for INSURANCE to do the linear advancement, in GENERAL, you can't count on insurance to maximize aesthetics when the PRIORITY for them to do it is mostly to OPEN the airways.

Let's see... some of the possible trade-offs would be:

6: 'Good by' to the lower wisdom teeth which are nice and straight and usually have to go before they do the BSSO.

5: A WIDER nose might not look that good BUT from the perspective of insurance doing the surgery to breath better, a wider nose base assists with such.

4: Upper jaw will move more forward which should explain #5 of getting the WIDER nose base. Since it would have to move about as much forward as the forward advancement of the lower jaw, it COULD give you the 'monkey' look with the upper jaw.

2: It will NOT make the jaw to jaw distance (enough) WIDER for any of that wide 'square' jaw angle look.

1: It will NOT drop the posterior jaw angle down (enough) for the 'square' jaw look mentioned in #5

OH, GEE looks like #3 was left out of the count down so let's look at #3.

The surgery WOULD most likely give you a sliding genio along a diagonal cut to both advance out your chin and vertically shorten it.  WOOSH... ONE GOOD aesthetic IMPROVEMENT from ALL that surgery which might be croweded out from even appreciating that aspect given the other possible trade-offs.

You very well could rig a situation where insurance would pay for it to expand the airways. But, you might not be able to rig a situation where they maximize aesthetics given it does look like they would be tempted to do linear advancement to both jaws which in YOUR case would NOT tend towards maximizing aesthetics.

That said, you might get the 'MONKEY'S PAW' which is getting what you WISH for BUT the wish comes with an UNWANTED consequence.
Please. No PMs for private advice. Board issues only.

face_backward

  • Newbie
  • *
  • Posts: 17
  • Karma: -1
Quote
It just sounds like you are able to WILL a good nights sleep WHEN you want to have one

I'm able to "WILL" a night's sleep that most people would call bad (short, fragmented, still tired) but which is much better than my usual untreated sleep.  If I could replace all my "sound" nights (with marked breathing problems) with "restless" nights (without), I'd feel better overall, but I'd still be going to the sleep doctor -- complaining about insomnia.  "Will" isn't quite the right word though, since it usually happens involuntarily before something stressful, and I can't keep it up for more than a couple of nights.  In the context of sleep studies, it's a strong version of the "first night effect", which sleep researchers well know to confound their studies if not accommodated, but which unfortunately can't be accommodated in a clinical setting (it would require being in the sleep lab/hooking up to the rented equipment for two or more successive nights).

Quote
Dude, I think you should be careful about trying to rig a situation where insurance pays for double jaw surgery IF your main or even most of the objective is actually AESTHETIC improvement.

You're absolutely right -- IF that were the main objective.  Actually, it's a distant second.  Maybe I didn't do a good job making that clear, because I started this thread talking about aesthetics -- I just use other forums for more detailed stuff about the functional/apnea aspect, and thought this would be the place to talk about the aesthetic aspect.  I've let this thread sort of devolve into more functional/apnea stuff now, when I should have probably shifted it to a different subforum here.

So, to be clear, if I could solve the functional problem (daytime fatigue, mood disturbances, forgetfulness, needing 10+ hours of sleep every night and falling asleep in the daytime if I don't get it, etc) with a purely internal procedure that had no effect on my appearance (e.g. turbinate reduction, tonsil removal, etc) I would unhesitatingly do that.  In my case, there doesn't seem to be any indication that anything but the jaw is abnormal enough to be the source of airway problem, nothing but the night airway problem seems to explain (in a "I can actually turn the symptoms on and off by changing this variable" way) the bad daytime problem, and nothing has ever improved the daytime problems as much as shifting the position of the jaw -- but that still doesn't work very reliably.

Quote
If insurance does find an indication to do the surgery to increase the airways, they MIGHT just be tempted to give you MMA, basically LINEAR advancement of both jaws equally. Your case looks pretty tempting for them to do just that. Tempting as that may be for INSURANCE to do the linear advancement, in GENERAL, you can't count on insurance to maximize aesthetics when the PRIORITY for them to do it is mostly to OPEN the airways.

Right, and here I'm not sure I would go for it even if it would be covered, because not only does it seem like it would be worse aesthetically, I don't think it would efficiently address the airway problem -- I've been told multiple times that my tongue is extremely "high" in my mouth (e.g. possible worst Malampati score), and it seems to me that the airway restriction must be somehow related to the vertical posterior maxillary deficiency, which linear advancement wouldn't address.  Honestly, I don't think I need *any* linear advancement of the maxilla -- just rotation -- and bringing the mandible forward to meet the maxilla in this more-rotated position would, implicitly, give plenty of advancement there.

My own (linear) advancement oral devices are very "touchy" in their effectiveness.  They seem to work best when I'm able to make them produce a delicate effect involving "suctioning" the back of the tongue upward into my top teeth.  Devices that protrude the jaw further along the bite plane, or pinch-hold the tongue further forward without pulling it "upward", are not more effective.  Unfortunately I can't directly visualize what's happening with my tongue and airway when I do this, but I feel like it suggests a vertical approach to a vertical problem, and argues against linear advancement from a purely functional perspective. 

Quote
That said, you might get the 'MONKEY'S PAW' which is getting what you WISH for BUT the wish comes with an UNWANTED consequence.

The "MONKEY'S FACE", if you will.  :-\
« Last Edit: June 12, 2018, 05:41:30 PM by face_backward »

kavan

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 4029
  • Karma: 426
I'm able to "WILL" a night's sleep that most people would call bad (short, fragmented, still tired) but which is much better than my usual untreated sleep.  If I could replace all my "sound" nights (with marked breathing problems) with "restless" nights (without), I'd feel better overall, but I'd still be going to the sleep doctor -- complaining about insomnia.  "Will" isn't quite the right word though, since it usually happens involuntarily before something stressful, and I can't keep it up for more than a couple of nights.  In the context of sleep studies, it's a strong version of the "first night effect", which sleep researchers well know to confound their studies if not accommodated, but which unfortunately can't be accommodated in a clinical setting (it would require being in the sleep lab/hooking up to the rented equipment for two or more successive nights).

You're absolutely right -- IF that were the main objective.  Actually, it's a distant second.  Maybe I didn't do a good job making that clear, because I started this thread talking about aesthetics -- I just use other forums for more detailed stuff about the functional/apnea aspect, and thought this would be the place to talk about the aesthetic aspect.  I've let this thread sort of devolve into more functional/apnea stuff now, when I should have probably shifted it to a different subforum here.

So, to be clear, if I could solve the functional problem (daytime fatigue, mood disturbances, forgetfulness, needing 10+ hours of sleep every night and falling asleep in the daytime if I don't get it, etc) with a purely internal procedure that had no effect on my appearance (e.g. turbinate reduction, tonsil removal, etc) I would unhesitatingly do that.  In my case, there doesn't seem to be any indication that anything but the jaw is abnormal enough to be the source of airway problem, nothing but the night airway problem seems to explain (in a "I can actually turn the symptoms on and off by changing this variable" way) the bad daytime problem, and nothing has ever improved the daytime problems as much as shifting the position of the jaw -- but that still doesn't work very reliably.

Right, and here I'm not sure I would go for it even if it would be covered, because not only does it seem like it would be worse aesthetically, I don't think it would efficiently address the airway problem -- I've been told multiple times that my tongue is extremely "high" in my mouth (e.g. possible worst Malampati score), and it seems to me that the airway restriction must be somehow related to the vertical posterior maxillary deficiency, which linear advancement wouldn't address.  Honestly, I don't think I need *any* linear advancement of the maxilla -- just rotation -- and bringing the mandible forward to meet the maxilla in this more-rotated position would, implicitly, give plenty of advancement there.

My own (linear) advancement oral devices are very "touchy" in their effectiveness.  They seem to work best when I'm able to make them produce a delicate effect involving "suctioning" the back of the tongue upward into my top teeth.  Devices that protrude the jaw further along the bite plane, or pinch-hold the tongue further forward without pulling it "upward", are not more effective.  Unfortunately I can't directly visualize what's happening with my tongue and airway when I do this, but I feel like it suggests a vertical approach to a vertical problem, and argues against linear advancement from a purely functional perspective. 

The "MONKEY'S FACE", if you will.  :-\

You seem pretty insightful as to what the problem is which is great. Maybe set up consult with Gunson just to get a plan to cross reference for the vertical posterior 'shortness' given he's good at doing the posterior downgrafts.  I was not actually suggesting linear advancement. Just putting out the caveat that insurance doctors might be tempted to do just that.
Please. No PMs for private advice. Board issues only.

PloskoPlus

  • Hero Member
  • *****
  • Posts: 3044
  • Karma: 140
There's a member here who had the option of linear surgery from her local surgeon or CCW rotation from the big bad W. Thankfully she chose the latter.  Sleep apnea completely cured. She's thrilled.

face_backward

  • Newbie
  • *
  • Posts: 17
  • Karma: -1
Re: I know I have functional problems, but do I LOOK like a could use surgery?
« Reply #21 on: September 24, 2018, 04:56:55 PM »
Progress report:

I've gotten better at building joint jaw-advancement and tongue-retention devices -- the last one worked for two straight weeks before crapping out. 

I had an in-lab sleep study at Stanford.  They saw "mild sleep apnea", AHI of 5 and min sat of 92% -- just at the cutoff to even make a diagnosis.  Got assigned another brand-new MD to review the test results.  Said MD seemed skeptical that my waking problems could be caused by such "mild" apnea, skeptical that my jaw advancement devices made such a radical difference as I said they did, and irritated by my insistence that CPAP didn't help.  I guess I'm not enough like what's in the textbooks.  Nevertheless, I did obtain a couple of surgeon referrals -- Wolford and Movahed, at least, as well as another guy who's more of a general sleep surgeon, but, as I since discovered, does not himself perform jaw surgeries (only collaborates with other surgeons to do them).  In the end I didn't even try to see A&G -- I don't have years to wait in line for this, and I got jerked around by their office for months when I tried to connect with them in advance of having these referrals.

I also got to talk, for the first time, with a surgeon who does actually perform bimax in the context of sleep disorders (Dr. Kasey Li).  On the plus side, he thought my story made sense overall, believed me that the jaw advancement devices worked, didn't think I was crazy for pursuing jaw surgery (though obviously he could not guarantee results), agreed that there wasn't much of anything sensible left to try, understood that there are many people in my position who really can't go on living without something like this, said he regularly performs CCW with downgrafts, and sounded like he could fit me in before my insurance expires without putting me in braces for months beforehand.  All great to hear.

On the downside, it sounds like it would be basically impossible to get any insurance to cover *any* surgery even while I still have it, even if my AHI were twice what it was, and I'd be on the hook for up $100k out of pocket.  Also, he seems very much like a "I know what I'm doing, I'll work out all the technical details, take it or leave it" kind of guy.  I tried to talk to him in particular about the specifics of the posterior downgraft -- what do you use as the bony shim, etc.  He says he doesn't graft from other locations (like the hip) and didn't see why anybody else would -- he just takes little wedges of bone out of the nasal septum to fill the gap.  This surprised me a lot, because it seems like that's a very thin bit of stuff to wedge into a spot that will bear the bite force of the molars (but I don't have a human skull here to examine, and he's the anatomy expert), and there doesn't seem to be enough bone available from that source to downgraft far enough for a significant rotation.  I'd be interested to hear what other guys who do such rotations have to say about this proposal (and whether anybody here has an informed opinion about that technique).

I should know by the end of the week how soon I can get in to see the other surgeons. 

Aside, a rant about health insurance:

If the insurance didn't approve this, I'd be charged $100k, but if the insurance approved it, I know *they* wouldn't actually have to pay out $100k -- that sticker price is only for individuals without the negotiating leverage of an insurance company.  Imagine, hypothetically (and ignoring copays, for the sake of simplicity) that overall, for everybody actually involved in doing the procedure (surgeon, nurses, anesthesiologist, hospital overhead, etc etc), $30k total is enough to cover their costs and come out ahead (this seems in line with the ratio that hospitals actually collect from insurance when these things are approved).  Suppose also that $50k is the most I can personally spend.

Then there are three scenarios:

(1) (Unlikely) The insurance negotiates with the hospital on my behalf and agrees to pay the $30k actual cost, and I have the procedure.  The hospital is ahead, I'm way ahead (for having gotten the procedure that was worth $50k to me for free), and the insurance is way behind. 

(2) (Most likely) Since the insurance doesn't want to be way behind, they fight me about it tooth and nail until my coverage expires, and I can't have the procedure.  The care providers are behind (losing business they would have been happy to take from the insurance), I'm way behind cause my life is still f**ked, and the insurance company is slightly behind for having to pay somebody to argue with me during months of appeals.

(3) (Impossible dream of rationality) I could just agree to pay back the insurance company $31k (or whatever they pay + some margin), and *everybody* comes out ahead -- the hospital recoups their cost and then some, the insurance recoups their cost and then some, and I get something I'd have gladly paid more for.

Alas, it can never be. 
     
 

Lazlo

  • Private
  • Hero Member
  • *****
  • Posts: 3004
  • Karma: 175
Re: I know I have functional problems, but do I LOOK like a could use surgery?
« Reply #22 on: September 24, 2018, 05:23:35 PM »
you look fine to me

face_backward

  • Newbie
  • *
  • Posts: 17
  • Karma: -1
Re: I know I have functional problems, but do I LOOK like a could use surgery?
« Reply #23 on: September 24, 2018, 06:53:32 PM »
I appreciate the input, Lazlo.  I probably should have started a different thread somewhere for these updates, but I suppose the thread-title question still stands.

I must disagree with your assessment still.  Here https://imgur.com/LECU2y2 is a current profile without facial hair.

I can't say that looks fine, for values of "fine" in use around here.