Still CPAP-intolerant, possible surgery(s) soon

[Swordz]

I am on my 2nd try at CPAP, and we'll just say its not going very well (again). Setup is a Remstar Auto w/ heated humidifier, and currently using a F&P Oracle mask. Yes, many people hate the oracle, but for me its the most minimalist mask and works best for me.

As I am trying to graduate from undergraduate studies in Dec, I am having to take 12 hours this summer and 18 this fall. Literally it is make or break time for CPAP or some other solution. Once school starts on the 4th of June, I will be full-time until the end of the year. My fatigue level is already rediculous, but the class schedule will run me into the ground. Why not take more time to grad? I'm 24, riddled with student loans, need to get into graduate school ASAP, and need to graduate so I can get insurance and $$.

Becuase of CPAP still not looking like my solution, I am considering further surgery. MMA/GA was considered, but put off due to lack of finances (11k needed). I have an opportunity to have this paid for: tonsellectomy, UP3, genioglosses advancement, and further turbinate reduction. A 2nd thorough opinion from a Harvard-graduated DMD and ENT noted a 75% chance of success with the above mentioned surgeries, or I could later get MMA to increase chance if above surgeries don't present needed results.

So, its looking more and more like I will be under the knife again in the next few weeks. OSA sucks and I'm ready to have life back, even if I'm only 24. I've definitely taken my time, thoroughly researched my options, and not done anything irrational. Keep in mind I've tried CPAP now 2 times, a dental device, had septo/TR reduction.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): humidifier, oracle, CPAP, auto

[Sleepless on LI]

Corey,

I feel for you. You have tried harder than anyone I know to make this work and have put yourself through so much that you really deserve a break here. What about the cpap is not working for you this time? And this may be a dumb question, but have you tried other masks other than the Oracle? I was one of the people you spoke of who really couldn't tolerate the Oracle, so I would have been cpap intolerant had it been the only mask I used. I thought for some reason you had tried the Aura.

You sound totally overloaded between getting out of college and your medical situation. If there is anything I can do to help you, you know I'm there. PM me and we can talk more. In the meanwhile, know my prayers, as I'm sure countless others', are with you. Try to take a deep breath and believe that everything does work out in time. Positive thinking comes in handy at a time like this to, if nothing else, help keep your morale up.

[meister]

If you find a solution, as 99 out of 100 highly paid Doctors would tell
you to lose weight, even though you appear to be a extremely healthy,
active, thin college student. It is that kind of medical help that many
of us have faced with our illnesses.

[bay_area_apnea]

Swordz - Corey -

I can relate to the tee!
I'm looking at the very same options and diagnosis!
You have my complete sympathizes from one who is experience the same frustrations and illnesses.

Question: Where did you find a doctor to do the MMA/GA for $11K?
Names? Referral?

Please let me know.
I wish you the very best of procedures and recovery.
[quote="Swordz"]I am on my 2nd try at CPAP, and we'll just say its not going very well (again). Setup is a Remstar Auto w/ heated humidifier, and currently using a F&P Oracle mask. Yes, many people hate the oracle, but for me its the most minimalist mask and works best for me.

As I am trying to graduate from undergraduate studies in Dec, I am having to take 12 hours this summer and 18 this fall. Literally it is make or break time for CPAP or some other solution. Once school starts on the 4th of June, I will be full-time until the end of the year. My fatigue level is already rediculous, but the class schedule will run me into the ground. Why not take more time to grad? I'm 24, riddled with student loans, need to get into graduate school ASAP, and need to graduate so I can get insurance and $$.

Becuase of CPAP still not looking like my solution, I am considering further surgery. MMA/GA was considered, but put off due to lack of finances (11k needed). I have an opportunity to have this paid for: tonsellectomy, UP3, genioglosses advancement, and further turbinate reduction. A 2nd thorough opinion from a Harvard-graduated DMD and ENT noted a 75% chance of success with the above mentioned surgeries, or I could later get MMA to increase chance if above surgeries don't present needed results.

So, its looking more and more like I will be under the knife again in the next few weeks. OSA sucks and I'm ready to have life back, even if I'm only 24. I've definitely taken my time, thoroughly researched my options, and not done anything irrational. Keep in mind I've tried CPAP now 2 times, a dental device, had septo/TR reduction.

[xxio]

Newbie here,
How do you know if you're CPAP intolerant. I have been on BiPap a few months now. I feel better in the mornings about 75% of the time, but still have groginess about 2-3x a month.

[Guest]

Sure wish you would take a picture of your throat wide open with a digital camera and post it here where we could see it and all say...

woooowha you really do need that surgery...(doesn't take a doctor to see if you have a crowded mouth).

... or wait a minute, appears your doc's only out for the practice or insurance money. Because creating a bigger hole for your tongue to land in doesn't usually help with anything. If you were overweight, had a unusually small mouth, large or crowded tongue etc. I'd say yeah okay, but from your pic it certainly don't look like you need any surgery to me. What about under your tongue? do you have any Tori under it crowding your tongue space?

Do you have a MRI posterior view? what does it show. There are other causes of daytime fatigue, have you ever seen a Hematologist?

[kteague]

Whew! Your post bleeds with frustration, and it just seems there should be SOMETHING out there to help you. If I remember correctly, going to sleep at all is a problem for you, along with not getting enough of the restorative stages of sleep (medicine induced?), and possibly PLMD. I just came from Cleveland Clinic today, and the doc there wants to start over with my diagnostics done in phases and see if there might be segments that can be helped so as to narrow the battlefield. If your different issues are fighting each other, could it be that your cpap experience's failure isn't in and of itself? Maybe surgery is your only solution, but it would be a shame to go thru surgery to help with the apnea and find the PLMD or insomnia still prevented sleep. For now, you could learn a lot by videotaping yourself with and without the machine, with and without medications, and in combinations. Not to replace sleep studies, of course, but to give you a clearer picture of your situation. And if truely ALL else fails, 75% odds on the surgery helping sounds pretty good.

[Sleeping With The Enemy]

Have you tried Ambian 10mg at night? A woman I work with was very intolerant of her CPAP, she wasn't wearing it and I told her to go to her MD, get a script for Ambian and it worked. She started out slow, wearing it maybe 30 minutes and now can tolerate it all night and its great.

[Guest]

Hmmm Ambien, PLMD, unable to get to sleep.
I also have PLMD, severe enough to interfere with REM, and at times I am unable to sleep, sit, walk, stand, etc. Stretching the (log) muscles helps some. I've been on Klonipin and Mirapex for 10 years; does help me to get to sleep, and stay under longer, however, the quality is still not adequate. I also have low oxy levels. I'm ready for DBS for PLMD if indicated. Tired of being exhausted. btw, Ambien did nothing for me, nor a second dose of clonazepam, which one can't do often due to it being a controlled substance. I wish IT did a better job of 'controlling'. The ONLY trigger I've found so far to my nightime PLMD is chocolate (dark) after 4 p.m. Figures!!!

I empathise with you, understand your dilemna, but have no suggestions to my regret. Please seek out a movement disorder neurologist if you haven't already. That's coming up for me in June. STRESS also is the devil in this puzzle of trying to find what's really going on. Who's on first? A vicious cycle, fingers pointing everywhere, no one at the helm.

[Swordz]

I find out Monday if Voc Rehab will cover the procedures, with the only 1 i'm worried about being the GA. If for some reason they don't cover that, I'll definitely try to come up w/ the $$. Might just have to sell my APAP, for the 2nd time!

I tried Ambien with CPAP to no effect, and no I don't have a MRI posterior view. I do have oral xrays taken from both my sleep dentist and Oral-maxofacial surgeon showing my limited airway. MMA would definitely be an option, but both are worried about my degenerative jaws.

Apology up front for any random thoughts or wordiness, as its late an another nite of no sleep....