Doctor Visit Shockingly Lame

[Janknitz]

Snug said "My sleep doctor doesn't even have the software needed to look at data. He didn't see a problem with this. I will only be going to him enough to get the prescriptions I need. All my other help will come from here."

I don't blame a sleep specialist for not having the software. There are at least 4 major manufacturers of CPAP machines and they all have their proprietary clinical software--and it's expensive for the physicians to buy a clinical software package. If a doctor invests in a particular manufacturer's software, then they have to insist that their patients buy only that brand of machines, and we would not be too happy about that!

But a sleep doctor who doesn't check the data (by asking the DME to make a print out or asking you to) is a sleep doctor who isn't interested in the EFFICACY of the treatment--especially if you are having issues. Some doctors don't believe the data because it's not as finely calibrated as the sleep lab instruments (supposedly), but they ignore that data trends can be useful--especially looking at a patient who may not understand basic things like the fact that they are sleeping with their mouth open, letting the therapuetic pressure escape before it ever gets to the airway.

That one month "how are you feeling and are you using the machine?" check is a Medicare requirement so the DME gets paid. It has nothing to do with YOUR health. If that's all your sleep doctor is interested in, then it's time tto find a new doctor. AND you need to monitor your own data because nobody is as interested in your health as YOU.

If you got stuck with a brick, see my "Help, I got Stuck with a Brick" blogpost, but if too much time has elapsed you may be out of luck.

[snuginarug]

That one month "how are you feeling and are you using the machine?" check is a Medicare requirement so the DME gets paid.

Yep, that describes what he did. Asked me if I felt better, ignored me when I said "no" and said come back in 6 months. How I responded to that is a whole 'nother story.

[macewa]

The first place where I had my sleep study done, my initial doctor left and the one I had to see could have cared less. I was having horrible problems and all he would do is say, "you must use your machine or they will take it away." Did absolutely nothing to help me. I quit him and let his office know why. Since I've been on here, I went back and looked at my data from that time period and for example, one night my AHI was 95.26 (had 3 months of that type of stuff). New doctor changed my settings but still on straight BiPap (Rx was for Auto Bi Level BiPap). If I got engaged with him, he got very testy and I felt like I had to fight. I still was having the nose burn problem. All he did was ask how I felt and I felt like a truck had run over me. He made decisions based on that and he is a sleep doctor as well as a pulmonary (sp?) doctor. He said I didn't need the nose surgery and it wouldn't help me. Well, I had it and know if I go back I have Heck to pay for that. I am glad I did the surgery as it has helped me and hey, when you can get 100% of breathing back in one nostril that's gotta be good. Now I go to my ENT who doesn't manage my sleep but helps me with Rx and my DME works with me. I'm scheduled for a new study at the end of this month but have no doctor to read it. ooops. My medical person is a PA but she is wonderful and hears me and was the one to get me on the path to dealing with this. I find it VERY upsetting that sleep doctors take so little interest in their patients. We are fortunate because we have found this site but there are so many out there that haven't found this Forum and quit their therapy. I can well understand why they do. If it wasn't for this Forum, I don't know if i would still be fighting to get things under control. How any doctor can help you if they don't see the data beats me.

I went in for a doctor's visit after my first month of using APAP. I wanted to know how I was doing--and solve a problem. I was shocked that their office segregates the data files into a separate database from the electronic medical records, so that the Physician's Assistant, with whom I had the appointment, has no access to them in her office. She had no way to look at the daily graphs from my S9 AutoSet!!!

Even worse, she was totally uninterested in the daily level of data, and was entirely satisfied with the summary report over the month's time. When I asked pointed questions about the graphs, which could possibly point to machine malfunctioning, she was again uninterested.

Do other users have doctors that make use of the richness of data available from a modern machine? Or is this typical of sleep doctors? What I experienced was a classic "I see the forest--who needs to look at trees?" attitude. It seems like such willful ignorance!

In my case, I had AHIs <5 the first week, and then watched them shoot up into the 15 range. I expected answers as to what was going wrong, and direction as to what to change. What I got instead was a patronizing "There, there. Just keep doing this for another month or two. You're still so new at this." This was entirely useless, not to mention insulting of my intelligence. I was steamed, and will never go back there again...

My hypothesis was that the full face mask interface was worn out enough to leak after a week, and wasn't sealing adequately. I have a new one now, but the AHI didn't drop, so that idea seems disproved. Any other ideas?

[GumbyCT]

In my case, I had AHIs <5 the first week, and then watched them shoot up into the 15 range. I expected answers as to what was going wrong, and direction as to what to change. What I got instead was a patronizing "There, there. Just keep doing this for another month or two. You're still so new at this." This was entirely useless, not to mention insulting of my intelligence. I was steamed, and will never go back there again...

This is your cue/clue to find another sleep doc. And for you to get busy reading/learning right here on this forum.

I had a similar experience with a VA sleep doc who would only tell me to tighten up my straps. And when I asked her what Flow Limitations were she told me it was too technical for me.

I vowed we would never be seen in the same room again and we haven't. Ironically, she is no longer employed there. I'm told she went on to start her own "practice".

[NightMonkey]

Doctor Visit Shockingly Lame

Welcome to the real world.

IMO doctors and physicians assistants are too expensive to be tweaking patients' CPAP therapy. Forget them for this purpose.

You have the mask, the machine, the software, a forum - all the tools you need to optimize your therapy in a way that medical professionals cannot.

I don't see a doctor anymore and don't expect to unless something comes up that I need a prescription for.

[chunkyfrog]

It seems the technology has advanced to a point the professionals cannot keep up with it.
This is OK for those of us able to self-educate and handle our own therapy.
For those who cannot do so, they are stuck between incompetents and charlatans.
I believe this is a tragedy.

[bikerchick]

I didn't realize what a great doctor I have and how much he explained to me and was actually prodding me to ask questions. I wish I would have known what to pay attention to during my visit. I know he gave me lots of information and data and showed me charts and talked about the types of events, durations, etc but most of it went over my head. He had the data from my study and from my card. I have know idea what my numbers were from the sleep study but I know he told them to me. I wasn't thinking straight otherwise I would have asked for a copy of the sleep study. My bad. Now I know better and because of this forum I am not feeling so overwhelmed even though there is a ton of data to review. Thank you everyone!