Help! Need new sleep doctor recommendations?

[KatyDid]

Hello fellow hoseheads,

I'll try and make a long story as short as possible:
1)I've been on PAP for about 10 yrs for what Mayo Clinic diagnosed as "opioid induced disordered breathing") . This was with even tested with a trial off my pain management to confirm. On CPAP I had modest success on AHI (brought moderate apnea down to mild)
However, it made a huge difference  in how I FELT ( daytime sleepiness, fatigue, etc)
3)About 3 years ago my apnea worsened considerably. I was having nights as high as AHI of 80 on CPAP.
4)I moved to Eastern Shore of Maryland  (think small towns). I started with a new 
"Sleep Doctor". Over the past two years he has tried AutoCPAP, when i called in to say it wasnt working his partner was covering and said I needed ASV and sent me for an ASV titration. The sleep lab had one tech and did nothing to inspire my confidence. When I went to my next appointment, my original Dr said I just missed the cutoff to qualify for the ASV.
He put me on AutoBipap which was not successful. At some point I had an bipap titration study. At this point I'm on BIPAP with backup. He had ordered AutoBipap with backup. When I explained the machine could not be set to auto when it has a backup rate, he didn't seem to understand. I asked him again about ASV which sounded like what he wanted, but this time he said it didn't work well for me at my titration (the other doc said I didn't qualify??) I also suspect he never looks at the detailed data from my Pap machine.

So....can anyone recommend a good sleep Dr and lab?? I can easily go to Baltimore or DC. I'm possibly willing to go further for someone who has special knowledge of opioid induced sleep apnea.

Sorry for the long post, and thanks in advance!

[Sleeprider]

Quickly looking online, I see Mercy, Johns Hopkins and Life Bridge. I would call and discuss your specific needs for central sleep apnea treatment related to prescribed opioid use, and your interest in ASV therapy. See who gives the best answers. I think you can improve your odds and answer some questions by obtaining copies of your past sleep studies and titration analyses. It sounds like your current medical team is giving you the run-around. If ASV "didn't work well for you at your titration", there should be a study showing that. I bet it was never done. Still, you're entitled to those records, and it might expedite getting scheduled for ASV titration.

My diagnostic sleep study was done by the Mercy Hospitals in Sacramento, and they seem to have a very professional approach, and specifically mention ASV on their web page "Sleep Disorders Treated at The Lung Center at Mercy". I have heard good things about the Johns Hopkins, but anyone that can establish experience with treating opioid induced CSA should be able to move things in the right direction. There is an AASM accredited clinic called LifeBridge that appears to be good. Here is a search link https://www.google.com/search?q=sleep+me...e&ie=UTF-8

[dmeRT]

another option...
if you just received the bipap s/t and its early in the billing/renting cycle. ask your dme if they'd just switch you to an ASV. same billing code so dme receives the same amount of $. of course they would require an order from your dr. for ASV mode. but at least you would have to go through the testing phase...

[trish6hundred]

Hi KatyDid,
WELCOME! to the forum.!
Hopefully, you find a doc who will listen and get you the proper treatment.
I wish you good luck.
Hang in there for more responses to your post. You have come to the right place for guidance.