choosing a sleep doctor - questions to ask

[bast]

hi everyone (who reads this),

i am a newly diagnosed hose-head, and have had some (and heard of many other) "interesting" experiences in the process of being diagnosed and getting treatment started.

one thing that seems to come up is that sleep doctors, centers where PSGs are done, and DMEs are all different. Part of what we do as "consumers" and "patients" is provide an opportunity for these folks to make a living. There's an assumption of goodwill - they are in the medical profession which is considered at its baseline to be helping people with their health issues. However, it seems that this board regularly serves as a sounding point for people filled discontent and frustration with their experiences.

it seems true to me that there is great wisdom and experience here, even with different opinions being held through personal experience. we are not doctors, but we know a little (or more) about the situation.

i wonder if it would be helpful to compile a list of questions for "interviewing" prospective sleep doctors. they work for us, after all. the questions would help folks make more informed choices, and also help the doctors realize that people have information and are willing to shop around.

I know I chose my DME after calling three places, giving them my insurance carrier's name and the type of my policy, and finding out from them how they would handle my needs (prices on masks, rental of machine, etc.). If I had known what a buffoon my sleep doc would turn out to be, I would have asked more questions before going to see him. Sure, it's just a copay and some irritation, since i'm in charge of my therapy where rubber meets road (or face, actually, eh?), but someone else could easily be suffering from his ineptitude.

when i went to my sleep doc for my check up, after 6 weeks of compliance, he came in the room yelling "congratulations!" with a big smile on his face. considering that he had the personality of a flash-frozen fish at our first meeting, I was curious about his enthusiasm. He gestured to the SUMMARY report from my smart card, saying that i was compliant.

he had my 90% pressures (over 6 highly stressful and varied weeks, with 3 different masks and wildly different leak rates), but didn't look any further than that. I could not believe that he was willing to consult with me based on such thin information. Every bit of the air going through that machine could have been coming out of my MOUTH for all he knew. He didn't ask how I felt or what I had experienced. He just tried to convince me to go on straight BiPAP, rather than staying on auto, even though my 90% pressures vary a lot (3-4 cm or so on each end), depending on my position, allergies, etc.

I suggested that he actually read more than the summary, and explained to him about some of my experiences. (even though he clearly didn't want to hear about this, i felt it might give him something to think about.) I talked with him about naps and how they ended up being a really positive strategy for me, since trying to start out sleeping with xpap all night was more intense than i could handle. also that the extreme sleep deprivation in my first month felt dangerous, and that no one had offered any support for that adjustment period when i was getting almost no sleep because of being awakened by the machine, leaks, etc. he just grunted and said, "well, you're fine now" How the #$%Q^ does he KNOW that I'm fine. I told him about variations in my AHI, how the whole picture changed when I switched to the decapitated twilight (best. mask. ever. - for me), etc. etc.

then he looked at my list of medications and said that i should be fine, but not to take anything that might impact my apnea before sleeping. i take fiorinal for migraines, which contains the barbituate butalbital. i would think barbituates might impact apnea events... so i mentioned this, and he said, "oh, you don't take it before bed, do you?" well DUH. if i have a migraine and i take medication for it, i am likely to go to BED to try to sleep the whole thing off. the guy is an md and i have to explain this to him?? he should be paying me, is all i can say about that.

anyway, pardon my rant. i understand that this is a self-serve revolution, so i am willing to draft a list of questions for sleep centers, doctors, dmes. i'm hoping some of you might help, since you have different and more insights into this process based on your own experiences.

that's all for now, more soon.

peace out.

ella

p.s. (off topic but compelling!) check out agrichar - a possible wedge against global warming: http://www.truthout.org/docs_2006/050307R.shtml

[linda b]

If I had to change sleep doctors, I would want to know her/his position on a patient being able to monitor own therapy through the software. My current doctor's only request was that I consult her before making any changes to the UPPER number on my auto machine. Not a problem for me at all as I understand that too much pressure can cause central apneas.

I would also want to know if they are associated with any particular DME or if the clinic with which she/he is associated also serves as the equipment provider. The reason I would NOT want my doctor that closely associated with the equipment provider is that they would be "pushing" whichever brands they stocked and the options for me would be more limited. I want equipment that is best for me, not that is cheapest for the doctor/clinic/DME.

[SleepySandy]

Hi Ella,

I'm sorry for your experience with your sleep doc. I agree we should come up with a list of questions to ask. The problem I always have when trying to figure out how to find a new doctor in general is how to get an appointment where you can just ask the questions. I'm on sleep doc #2 and I made my appointment "as a second opinion with the possibility of becoming his patient". The appointment was actually treated as a "new patient" appointment and my insurance was charged $500 for that appointment. It wasn't a problem, though because I loved the doctor and he's now my sleep doc.

My mistake may have been not asking if there's a type of appointment where you can "interview" the doctor. I don't know if such things exist, but I think that would be the best way to start.

I also believe in doing as much research as possible ahead of time. My personal choice is to only go to a doctor who is Board Certified in Sleep Medicine. While all board certified sleep docs aren't great, I wouldn't want to go to someone who hasn't gone the extra mile to become board certified. In addition, the length of time (s)he's been board certified *might* matter to me. If someone was certified last year I might hesitate.

I would ask for recommendations here. People tend to ask "I'm looking for a sleep doc in Anycity, USA" and the responses are often handled in PMs.

Back to the questions. Here are some things I can think of:

1. How long is the initial appointment? My initial appointment with both of my sleep docs was 1 hour.

2. What is the process regarding sleep studies? I would ask this question because I didn't like not knowing what was going to happen. I would have preferred a paper or something explaining how the process would work / what to expect. I had a sleep study and waited. After a month I got a letter saying I had apnea and needed to call to schedule my titration study (that letter included the summary report of my initial study). I scheduled the titration study and had it. After a month I got a call saying I needed a CPAP and they scheduled my appointment with their DME. I went to my DME appointment, got my CPAP and mask and was sent home to figure things out.

3. Will he review my sleep study results with me in person and give me the time I need to ask questions so I understand the results?

4. Will he collaborate with me regarding my choice of CPAP machine and will he agree to prescribing a fully data-capable machine so I don't have to fight with the DME?

5. Will he object to the fact that I intend to monitor my therapy with EncorePro (or whateve software)?

6. Will he review my EncorePro (or whatever software) data with me during follow-up appointments?

7. What DMEs does he recommend? It should be plural. And as was posted before, the DME should NOT be tied with the sleep lab.

8. How will he respond if I'm not feeling better with CPAP? Will it be - give it more time? Will it be "well you should"? Will it be - we need to do more investigation? Will it be - there's nothing else I can do? (that was the response of my first sleep doc).

9. What will his approach be if I'm not feeling better with CPAP? Will he continue to help investigate other possible issues? This is the best thing my current sleep doc did for me - he sent me to another specialist which was the right choice in my case.

10. What is his opinion of Provigil or other stimulants? I would want to know if he thinks Provigil is a good way to augment the fatigue caused by apnea. I wouldn't want a doctor like that. I was prescribed Provigil by my therapist to get me functioning a bit better until the sleep studies were done. Unfortunately, Provigil has absolutely no affect on me. Even more unfortunately my first sleep doc didn't believe me - "Provigil works for everyone" according to him.


When I went to see my current sleep doc (remember this is #2), I wrote up a document with my history becuase I figured it would be quicker for him to read it than for me to try to explain it all. Towards the end I included this paragraph:

I would like to let you know what I’m hoping to achieve with our relationship. I need a doctor who is going to trust that I know my body and my emotions and will work with me to figure out what is the best course of treatment. I also need a doctor who will be honest with me regarding his opinion of my situation. I need a resource to review my data with and answer questions. I need a doctor who is willing to discuss my care with my therapist. I need a doctor who will understand that I need to be highly involved in my care. I have EncorePro and intend to continue reviewing my CPAP data. I feel that the majority of my depression has been conquered. That was not an easy task. I am focusing all of my *limited* energy on conquering my fatigue. I cannot do that alone. I just want to feel better.

I have reasons behind every statement I made, most of which are tied to my experience with my first sleep doc. I can see how each of those statements could be turned into a question to see if he will meet your own needs.

The bottom line is some questions can be common, but some are going to depend on the individual. That paragraph is very personal to me based on my needs and experiences. I highly recommend thinking about what you need from the doctor and communicating that clearly in the first meeting. If he's unwilling to meet your needs, he's probably not the right doctor for you.

[Babette]

Sandy,

GREAT POST!!!!! Thank you so much!!!

I am in the process of being terribly confused by the PROCESS of getting a cpap. My primary referred me for a study, I went, I never heard back from ANYONE, I called my primary to get my results, and her nurse scheduled me to have my left breast biopsied!

It's sorta run downhill from there... Last Thursday, being so severely sleep deprived I was shaking, I left everyone have it with both barrels. I called my insurance, I called the hospital, I called the sleep center, I called the DME. Only one who called me back is the director of the sleep center, who informed me - first time I knew this - that she is my sleep doc. We had a nice chat, and I went away feeling good about her and looking forward to meeting her live in 6 weeks.

I decided on Monday since I hadn't heard back from my repeated calls to DME that they were toast, and have been ignoring THERE calls to me ever since. We've exchanged some unpleasant emails. At this point, I'm letting them have the last word.

I was given a Video tape at the first sleep study that told me what to expect. None of that process has really occurred. This forum is about the only thing that's teaching me anything about how all this is supposed to work.

So. At this point, I think I need to start interviewing DME's. I've gotten two great referrals - one from you, dear lady - and another in Gig Harbor. I'm getting used to the equipment I currently have, so maybe I can hang on until I see the sleep doc.

Thank you all for this thread. Very helpful indeed! None of my rant is helpful, but thank you for letting me rant!!!!
B.