Doctor Visit Shockingly Lame

[Datacrazy]

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?

[Goofproof]

That is why you take a interest in you data yourself, medical people are interested in their time and their liability, for the best treatment you have to take charge of it yourself. Jim

[SleepyToo2]

Datacrazy, sadly, the more you read here and the more doctors you see the more you will realize that your experience is the norm. It is an unusual doc who will take the time to look closely and answer your questions. To try and answer yours, we need more data.
What mask are you using, and what is your usual pressure (min, max, and 95%) and humidity setting? Do you follow all the rules for cleaning - mask, humidifier, hose, face? What is your usual sleeping position? Do you breathe through your mouth or nose? What were your AHI numbers during your sleep studies, and the averages over the past week/month? We need to know the breakdown - clear airway apneas, hypopneas, obstructive apneas. What does a typical night that concerns you look like. How many times a night do you typically wake up? There may be more questions, but those will get you started.

[tetragon]

My last sleep doctor visit:
SD: Are you using your machine?
Me: Yes.
SD: Any problems with your sleep?
Me: I still wake up half a dozen times throughout the night and I don't feel rested. Also, last visit you asked about snoring. I went and did some recording, and it picked up on some quiet snores.
SD: You didn't snore at your pressure during the study, so that is irrelevant. Come back in six months to a year.
(he doesn't give his receptionist his schedule further than a month in advance, so I note down when to call the receptionist to make the next booking)

My regular doctor also hasn't used my machine data, but she pays more attention to the problems I encounter and what I try. I think I'll get her a souvenir when I visit the DME this week: a copy of their export of my data. After all, they're going to fax a copy out to my sleep doctor.

[edm_msu]

Initially, my general practioner ordered both overnight sleep studies and made the prescription for a regular, not auto, CPAP. I requested an auto prescription. She ordered an auto prescription. The DME said that she needed to specify a range. The tritation study had only specified a single pressure of 9 cm H2O for a regular CPAP. She then said that she could order me another titration study. I completely agree and understand her point. She is outside her expertise. Rather that having another titration study, I made an appoint with a sleep specialist. He knew what to do and ordered an auto with a range of 6 to 10 cm H2O. For me it is nice to talk to a specialist because I am an inquisitive person.

What I am getting at is that general practioners are not sleep specialists. You may be better off with a sleep specialist.

Ed M.

[Mary Z]

For someone who is datacrazy you sure didn't give us any data to go on. Please fill in your profile as to machine, mask, software, and tell us more information about your pressure, leak, machine useage. I have a great doc, but I don't expect him to wade through day after day of detailed data reports- just the data summary is needed. Why do you think the machine is malfunctioning? The DME should handle these questions. Good luck, hang in there. Don't go doctor hopping unless it's really necessary. You need to give someone time to get to know you.

[snuginarug]

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.

[edm_msu]

If you do see your doctor, you could print out the relevant data. Relevant data could be summary data, individual night data, data that you don't understand, data that shows a problem, etc. This will save the doctor time and get the doctor focused on what is relevant. It also shows initiative on your part that shows the doctor that this is important to you.
Ed M.

[Maxie]

My "sleep doctor" is a pulmonologist who is more focused on COPD and asthma so at my first visit the RT asked if I was seeing the doc for anything except my sleep apnea. When I said no, he said I could make my appoints to see him and skip the doc. My RT reads the data and says I'm fine. Now, if his reading of the data did not coincide with what I get when I download it, then we would have a problem because after being on this forum and learning how to check on my own data I have more confidence in what I see than what he says. Does your doctor have a RT on staff? I got my machine supplies from my doc and when I needed a mask I email the RT.

[chunkyfrog]

When we give our doc data printouts, they go right in our files.
So far, he sees us himself--I think he likes us.

[MaxDarkside]

My sleep doctor is just a wee better than described, he does only look at the summary reports. They are paid by the patient visit, not for solving your problems. I will say he's helpful in the big picture on sleep quality, but does not get into the details, he does not have the time. In other medical experience, such as my internal medicine doctor, it's quite close to what you describe... in/out/see you in 6 months, regardless of my maladies. Sometimes I have to wrestle him to the floor, figuratively, such as when I demanded a sleep study from him, "Oh, OK then, I'll order it (he rolls eyes)". Thank God I did and he did.

[ameriken]

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!

I don't know if it is typical, I think it is, but my experience was similar. The difference is my Dr didnt even want to see the forest. I brought my reports and asked if he wanted to look at them and he said 'No, I don't need to'. The rest of the appointment was purely subjective 'how do you feel' kinda meeting. I guess we patients are not assertive enough and we just roll over and play dead when at the mercy of a Dr, when we instead should be holding their feet to the fire to look and listen (and explain in layman terms).

[Slinky]

Oooooh! I LIKE that idea of holding a few doctors' that I can think of feet to the flames. Yeah!!!

[the_nap_ster]

I teach med students and pre-med undergrads for a living. The experience has led me to be... skeptical... of doctors. There are some fantastic ones out there, but they are fantastic by disposition, not by training, and it is not the norm.

You have a vested interest in mastering your own treatment, and your doctors do not have the same incentive/understanding. Thank goodness we have data capable machines and forums like this, to help us treat ourselves effectively.

It makes the appointments kind of ridiculous sometimes, though.

[MaxDarkside]

I took in my ResMed/pulse-ox/Zeo charts (with the individual colorful brainwaves) to my sleep doc and he was overwhelmed. Not only TREES but all the SHRUBS too, not just a forest. After I explained what it was, and what I did for a living related to data and who I serve (customers... well known companies), he became interested and in the end, shook my hand vigorously and said he looked forward to seeing me in 30 days to learn more. I have not booked the appointment for "his training" . If I play my cards right, maybe he can pay ME (LOL) to come in and teach him a few things about sleep and sleep apnea (Hahahaha)