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choosing doctor and lab
#1
I am looking for a great sleep doctor and a great lab to do a new sleep study and evaluate my condition and recommend the optimal treatments.

Am willing to travel to the East or West Coast if there are labs and docs there that are known for being at the top of the field, and then rely on a more local sleep specialist for maintenance issues, if needed.

I have bc/bs insurance, which would allow me to get the evaluations anywhere, so I am looking for the best quality.

E.g., is Standford sleep lab in the context of a university likely to get me some top people?

I have had sleep apnea for many decades, using auto bipap, wake up a lot, headaches often, etc. etc.

Wanting some guidance on specialist services in the context of working with other collateral specialists I am working with (e.g., dietitian, general physician, etc)

Any thoughts would be welcome.
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#2
The first step would be to determine if your existing equipment and settings are working for you.
To do that you will need software like Sleepyhead to analyze your current results. The data collected by a fully data capable machine over the course of several months will be far more valuable than one night in a sleep lab. That data presented here or to a knowledgeable sleep specialist will provide real answers to what is working and what isn't.

You may simply need to adjust your pressures or mask.

Adding a recording pulse oximiter to your data capable bipap will provide ~70% of what you can get from a sleep study, but you can gather weeks or months of data.

My advice, start with what you have and learn to understand it. Then build on that knowledge with a good sleep doc if you can find one. Many of the folks here do better on their own than with a sleep doc. I am one of them.
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#3
being that it is an auto bipap, I'm not sure the settings are too important, since as I understand they are set automatically. My encore software shows my upper and lower limits are appropriate. I have had sleep apnea since I was 12 years old (50 years), and am hopeful someone might give guidance regarding my original query. Thanks!
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#4
I use a BiPap ASV and adjusting the upper limits made a dramatic difference in my therapy. I tried what my sleep doc said for about an hour. Then I did the opposite and things fell into place.
I am sorry I don't know ANY Sleep doc I could recommend anywhere.
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#5
I'd say Standford would certainly be a top clinic on the West Coast. There are many advantages to going to a research facility especially when you've seen other specialists and still have problems. At the very least, you could contact them for recommendations.

https://stanfordhealthcare.org/medical-c...vices.html
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#6
Reputation and patient service are not necessarily synonymous, and a major disconnect exists due to the intervention of insurance who may or may not find your choice in-network, and will insist that any treatment be "medically necessary". I'm aware of clinics operated by UPMC (Pittsburgh), Cleveland Clinic (Cleveland), UCLA (Los Angeles) and many others. Keep in mind that the clinics are operated by technicians with data interpreted by physicians who make recommendations. Time is at an extreme premium, and these facilities are often as focused on teaching, as they are on being progressive researchers. Patient care may fit into that formula somewhere. If you research them online and ask, you would probably find forum members with first-hand experience. I applaud your approach, but I'm not sure you will get better results than if you become the expert and advocate for your own best interests.

If you are using auto BiPAP like the PRS1 BiPAP Auto (760), then don't disregard that we might be able to help you optimize your existing treatment here. Clinics diagnose and titrate, and you are clearly interested in the titration phase, but have not identified a reason why you may not be optimally treated. To do that, you'll need to start looking at your efficacy data that comes from the machine and using that to better understand your symptoms and help guide the specialists.

Some members here have had very difficult complex apnea symptoms totally ignored by the professionals, while others have had very effective and intuitive doctors that got them dialed in; the latter being relatively rare. Insurance runs the show and dictates how the doctors prescribe and determine medical necessity. BC/BS is no exception when it comes to DME, even though it can be very good, low-deductible insurance. The more you know, the better you will be able to get the results you seek.
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#7
(02-03-2016, 01:46 PM)leiko49 Wrote: I am looking for a great sleep doctor and a great lab to do a new sleep study and evaluate my condition and recommend the optimal treatments.

Am willing to travel to the East or West Coast if there are labs and docs there that are known for being at the top of the field, and then rely on a more local sleep specialist for maintenance issues, if needed.

I have bc/bs insurance, which would allow me to get the evaluations anywhere, so I am looking for the best quality.

E.g., is Standford sleep lab in the context of a university likely to get me some top people?

I have had sleep apnea for many decades, using auto bipap, wake up a lot, headaches often, etc. etc.

Wanting some guidance on specialist services in the context of working with other collateral specialists I am working with (e.g., dietitian, general physician, etc)

Any thoughts would be welcome.

IMHO, Stanford would be my #1 Choice.

I seriously considered going there a few years ago.
I knew someone who was in a very high position there at the time & he would have been able to move me to the front of any waiting line.

I also had BC/BS as my only insurer then and they considered Stanford to not be a Preferred Provider - so they would only have paid 60%, instead of 80%.

Traveling there would not have been a problem, since I was already regularly traveling there anyway (4 Hour Flight).

I just never did, not because of the additional cost, but because I had been on CPAP / APAP for many years prior & I just did not feel that they could be more beneficial than what I had learned during all of those years.
I am lucky to be one who initially took to CPAP like a Duck to Water & have never really had a problems to speak of.

I think that Stanford should be considered by anyone who is just starting out & has problems or by someone who has problems that warrant a true expert.
I do not think you will find anyone more qualified then Stanford.
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#8
I want to thank all who responded, very very helpful information. I may eventually seek to go to sleep lab out of state, although a Dr. referral (along with lab) could be helpful, in AZ, as well as those who are working in conjunction with the labs that were identified. Going to a reputable lab out of state would be limited without working with a great pulmonologist to interpret the results, give helpful directions.

I will be also using this board more to see what I can do with existing machine to get more out of it, rather than rely on auto settings.

Thanks!
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#9
also, while no one has yet been able to recommend a physician, someone give me guidance on how to find a physician. Do I just find a pulmonologist?
Thanks!
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#10
(02-07-2016, 11:07 AM)leiko49 Wrote: also, while no one has yet been able to recommend a physician, someone give me guidance on how to find a physician. Do I just find a pulmonologist?
Thanks!

You're correct in finding a pulmonologist first, as sleep disorders fall under that specialty. Then search for an MD who has trained in adult sleep medicine. I'm not sure if one can be Board Certified in sleep medicine or not, but certainly extra training in that area is what you should be looking for.

I hope this helps.
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