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Need opinions - am I looking at this wrong?
#11
RE: Need opinions - am I looking at this wrong?
In the meantime post your sleepyhead data. Without question, follow the above advice, it is solid, BUT <-- the big but, we MAY be able to get some improvement with the CPAP. With Central/complex apnea on an APAP we frequently end up on a single pressure (CPAP) without EPR or Flex that helps, but it takes some trial and error. The bilevel/bipap machines above are where I expect you to end up. Many have to fail on CPAP/APAP then fail on bilevel before the insurance will provide an ASV machine.
Fred Bonjour - 0 - LAUNCH Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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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. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#12
RE: Need opinions - am I looking at this wrong?
Hi jrwill228,
WELCOME! to the forum.!
I’m sorry you have had such a rough time getting proper treatment for your sleep problems.
I wish you good luck in finding a sleep doc, such as the type that was mentioned by Robbysue.
Hang in there for more responses to your post.
trish6hundred
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#13
RE: Need opinions - am I looking at this wrong?
I went much the same route and really feel for you. I hate to hear that you are having to suffer. My "expert sleep doctor" was a pulmonologist and insisted on setting very high pressure on my BIPAP (at least they got that part right) for a whole year. I had mixed apnea, including central and he was only treating the obstructive.  With high pressure, I got worse before I got better because my brain thought I was "overbreatheing" and would signal me to stop. I was not informed enough or able to figure out what to do and gained a lot of weight which I'm still trying to lose. Count yourself lucky that you found RonySue and this Forum.  I found her old blog "Adventures in Hosehead Land," and it helped me realize what to do.

I requested copies of my records and sleep study results ( these are legally yours) and referred myself to a neurologist.  Without even doing another sleep study, the neurologist dropped the maximum pressure from 29 to 16, and it was magic.  My AHI stays around .8 to 2.3 and I never miss a night of use.  Be persistent in seeking a neurologist with specialized sleep disorder training. Be clear about your current level of apneas and untreated central apnea. If necessary, write a brief letter to the neurologist, letting him or her know you are waiting for an appointment. Get on any waiting list and keep calling to check for cancellations.  

Let us know your progress! Central apnea makes things more complicated, but there is effective treatment that will give you relief.
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#14
RE: Need opinions - am I looking at this wrong?
You might want to consider helping the entire community of potential hoseheads by recounting your experience to the medical quality assurance board in your state and the hospital (if any) where this physician practices. This borders on patient abandonment and failure to render care. For many doctors, sleep tests are a cash cow and they are more concerned with insurance coverages and reimbursements than they are with the patient. Document everything if possible.
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#15
RE: Need opinions - am I looking at this wrong?
(08-01-2017, 10:46 PM)srlevine1 Wrote: This borders on patient abandonment and failure to render care.

While we have many different issues here, your statement above exactly reflects my experience.

I was told to return in a years time even though I was nearly shouting in his face "this treatment is not working, it is doing nothing for me".

A formal complaint to the hospital was a complete waste of time.
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#16
RE: Need opinions - am I looking at this wrong?
I have an appointment tomorrow with a neurologist who specializes in central sleep apnea.  Hope this helps.  I think I got fired yesterday from the ENT guy when he basically told my wife that central was untreatable.  She told him he was a "dumbass and didn't know what he was doing".  I think maybe she's over this also....

I'll let you know what she (neurologist.... NOT my wife) has to say after the appointment tomorrow.
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#17
RE: Need opinions - am I looking at this wrong?
Quote: I think I got fired yesterday from the ENT guy when he basically told my wife that central was untreatable. She told him he was a "dumbass and didn't know what he was doing".

Your wife sounds like a very perceptive lady!
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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. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#18
RE: Need opinions - am I looking at this wrong?
(08-02-2017, 02:58 PM)jrwill228 Wrote: I have an appointment tomorrow with a neurologist who specializes in central sleep apnea.  Hope this helps.  I think I got fired yesterday from the ENT guy when he basically told my wife that central was untreatable.  She told him he was a "dumbass and didn't know what he was doing".  I think maybe she's over this also....

I'll let you know what she (neurologist.... NOT my wife) has to say after the appointment tomorrow.

"Dumbass" oh I love it.

Our lot put up notices telling us we should respect them, I pointed out to them on a certain social media site that I was always told that you had to earn respect, so clearly they were getting something wrong. Dielaughing

Best of luck with the neurologist, mine said he was not sure what was wrong, but hey, we had better put you on some medication! I should add that under our system the respiratory department deals with Apnea, while the neurologist was supposedly looking into epilepsy, we never did get a fix on either really.
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#19
RE: Need opinions - am I looking at this wrong?
Unfortunate, but it seems like many of us here have to deal with what I call the Ducks. Hint, ducks go QUACK. No, I'm not implying every doctor that we deal with in apnea therapy are misinformed, stubborn, er etc. I chose to deal with my current duck until after setup of the ASV device. No pun fully intended, be patient, but do what is best for your personal situation. Sometimes when I visit my pulmonary doc, I feel like I'd like to play Whack-A-Mole. Good for the duck I left the mallet at home. Cool
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice. Even a 1,000 mile trip requires a good first step. My recommended first steps include getting good walking shoes, 1 great cup of coffee, and a good GPS.

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