Finding a GOOD sleep doc???

For those of you who have found sleep docs that pay at least a bit of attention to your machine's data and are willing to talk to you in a positive fashion about your desire to monitor (and potentially tweak) your therapy on an ongoing, day-to-day basis, how did you find such a decent doc?

I'm still looking for a doc whom I can manage to get along with---in the sense of a doc who respects me and the fact that I am interested enough in my condition that I've done some real research, reading, and learning about this condition. And a doc who actually listens to what I have to say. Crossed off doc #3 off my list yesterday. *sigh*

robysue, I'm not sure how you go about finding a good sleep doc - I think it's just trial and error.

I hadn't even seen my neurologist until the day the DME supplier came to our clinic to give me my gear. My diabetes endo did the referral for the sleep study and the neuro at the same clinic (where all my docs are btw) was sent the results for follow-up.

When she first met me, she didn't seem too interested in imparting information to me and just kinda read me what I should be doing and little else. On my next appointment with her 30-days later I went there armed with printed data and graphs from my machine. She seemed like a totally different neurologist and after recovering from being blown away by the knowledge I'd gleaned from the wonderful folk here, her attitude changed completely!
She went over the data with me, said if I wanted to experiment with pressure, to do so carefully and conservatively.

The next appointment was at the 6-month mark. She greeted me warmly and we discussed my therapy and its success and she was happy for me to continue as I was, and now she only wants to see me if anything changes for the worst, or I have questions that I can't find answers for. She doesn't believe I need to just see her for the heck of it if everything is going well.

Mind you - she changed my DME after the first month as they didn't send her my data, nor were they very helpful to me. I'm now with a much better DME which deals exclusively with XPAP and nothing else and they have very knowledgeable staff who I go to occasionally with questions.

So, I thought I was getting a not-so-good sleep doctor, but found that when she saw I wanted to take charge of my therapy and learn as much as I could, she became the best-sleep-doctor.

Cheers,
xena

I kept making appointments till I found one. Mine is young, just starting a practice, and works as an associate with an established Sleep Doctor. For my first appointment, I took my charts, graphs, and sleep history including my Zeo data. She was excited to find a patient who was knowledgeable in her area of expertise and treated my opinions with respect. She was not at all put off by the fact that I wanted to take an active role in monitoring and tweaking my therapy. Going forward from that point, we have been partners in my therapy. She was number 4 for me and a keeper.
It was largely luck that I found this Doctor, but she had been mentioned by a DME (not mine) with whom I'd had a casual conversation about sleep doctors and she happened to work in an office where I had an established relationship, so that made it easy for the appointment.
If I were looking for another, I would consider asking some DME's for suggestions and I think I would tend toward those just starting a practice.

I just lucked out that the pulmonologist my GP sent me to is great.

I realize I am in the small minority on this board when it comes to my feelings on this, and everyone is different with his or her expectations, but I don't think the average sleep doc is of any use to the average OSA sufferer once the doc has written the Rx. If he effectively oversees the diagnosis and the titration and dots his I's and crosses his T's with how he words things for the DME and insurance to my benefit, he is a good sleep doc, since that's basically what they do. He oversees finding a pressure for me to start with. But any tweaking or improvements or life-quality decisions are up to me and me alone from then on.

I realize that many patients have problems beyond the titration phase, but it is my belief that equipment-related problems will very rarely be addressed by a doc--since the treatment equipment isn't really in the doc's direct realm. Some docs, good and bad, are willing to step outside that realm, even though it isn't their job. But things like comfort features and mask variations and the like will usually end up falling to the patient and whatever the patient can get out of the DME or find elsewhere online from other patients. Same with software and data. A doc may be interested in that stuff, but that doesn't make the doc any good at it. And he can't really do any of that for the patient effectively anyway. If it isn't found in a lab or with official diagnostic equipment of some sort, a good doc is unlikely to take it seriously himself whether he is willing to explain that to a patient excited about home-machine data and home software or not.

I want a doc to spend time doing what a doc does, not what I'm supposed to do or a DME is supposed to do. I don't expect a doc to listen to me talk about software and charts and other things that help my therapy and my sleep, just to humor me. I don't want a doc to pretend to be excited about things that aren't taught in medical school but that I learned online.I want him to be excited about what HE knows from his channels, not what I know from my channels. We each have a job to do. He does his and I do mine. We cooperate, but there should be differences in our opinions and our approaches.

On the other hand, if I was continuing to have sleep problems after all the normal stuff was tried, I might look for the kind of specialist who was willing to try, accept, or work with non-mainstream approaches. Or I might look for a CBT sleep-hygiene expert if my behavior was getting in the way, or I might look for a surgeon who tries things that may not be very common. But I wouldn't expect the run-of-the-mill sleep doc to be into those kinds of things himself.

It is my understanding that docs like Park and Krakow and others of their ilk are famous for being willing to think outside the box for those patients who don't find what's in the mainstream box to be working for them. But I would try every tweak, trick, and sleep hygiene approach that I could on my own before paying big bucks for the big guns, myself.

robysue wrote:... how did you find such a decent doc? ...

Sorry you are having problems with your current / now previous sleep doctor.

In a nutshell, I think that is a lot of "hit and miss" involved.

Yes, it helps to have a board certified sleep doctor. It also helps to decide on the original specialty (pulmonologist vs. neurologist). For example, if your problem were just obstructive sleep apnea, then a pulmonologist would be a good option. But if you suffer from insomnia (as you do, if I remember correctly), then a neurologist would probably be a better option. Of course, I suffer from a degenerative neurological condition. So, I decided to see a neurologist about my sleep problems.

Unfortunately, even doing that type of selection will not yield a "compatible pairing".

For example, I have had neurologists that thought I was being obsessive about keeping track of my central sleep apnea. As a result of my visit with him and poor insurance, I did not go back and force that my central sleep apnea be addressed. That led to uncontrolled high blood pressure. Add the ibuprofen for the morning headaches and you suddenly have kidney damage. So, that "compatible pairing" actually is very important.

Fortunately after trying one other neurologist, it became clear we were a good match. He listened to my complaints and requested tests to confirm my sleep problems. During my last visit he teased me that I did not have the charts from my machine ... and then asked me to be certain I brought them next time he saw me! So, while he teased me about it, he also respects the value of the data within them. Nor was he upset when I explained that I had raised the pressure support slightly. I explained why, how I measured the impact and the results. He wondered if my AHI had increased and might require a new titration study. But once he heard the AHI had decreased with that change, he was happy. He noted the change and we discussed other issues.

But it takes a doctor that is not threatened by and educated patient. I fear you may face the same problems, since you probably can run rings around most doctors when it comes to understanding the statistics that explain the data. Though most doctors have more than a passing acquaintance with statistics, some simply do NOT understand what it means.

I had one doctor tell me that central sleep apnea is very rare, so I can not have it. I asked if the data said I had central apneas during the sleep study. His answer: yes. "So, do I fit the definition of central sleep apnea that needs to be treated?" No, since it's so rare. You can't have it. Sheesh!! He gathered the data, but refused to act upon the data that showed it was an issue.

This problem of not understanding data is not limited to doctors. I've had more than one computer professional (again who *must* have more than a passing understanding of statistics) completely miss the mark. One system manager explained how their systems were running fine, since they were only running at an average of 75% capacity during the *ENTIRE* previous month. Of course, that included nights, weekends, vacation. Sheesh!! I had them rerun the data to show prime time only and they discovered they were running at about 96% of capacity. I then had them add in the 90th percentile and 10th percentile number and they were aghast at how skewed the numbers were toward the "average". Even the 10th percentile was above their previous "average" (above 75% utilization).

Sadly, many people simply do not understand the conversation when you turn to the statistics to try to understand the situation. Doctors are no exception to that.

So, finding the right doctor really ends up being a hit and miss process. Here's hoping your next doctor will "get it". Best wishes!

Mary Z wrote:I just lucked out that the pulmonologist my GP sent me to is great.

Ditto.

I think "good sleep doc" is an oxymoron, because most of them are ''oxy''-morons.

Have you tried Avram Gold, M.D.? I have no idea if he welcomes motivated patients, but he's not far from you, and well-published.

It's sad how hard it is to get a good doctor for anything these days. The system drives them into just going through the motions, running patients through the appointment machine, not really thinking about what's going on, and just dispensing formulaic procedures, tests, and medicines and hoping something good happens.

I have been on CPAP since Sept 16th and I have never met my sleep doctor. My family doctor referred me for a sleep study, a sleep doctor read the study and prescribed CPAP for me. Never met him and never had any followup instructions. Met with a sleep therapist to get my machine and had about 15 minutes instruction on how to use it. Other than that I've been on my own. Intend to discuss with my GP when I go in for my next regular checkup.