OSA and the problem with medical practitioners, DME's et al

[markinOz]

My 2 cents worth.

I believe that the major problem with the way we are treated by Doctors, DME's, sleep techs, etc is that the treatment they advocate is based on so few nights’ data.

My experience was basically that I had two sleep studies. The first was to diagnose if I had OSA or not. The second was to set my pressure. I was then referred to a supplier to purchase a machine. That was it.

Our sleep patterns change each night, week, month, year .... Our needs change. The machines, masks, climate, our weight, etc all changes. Do we go in for more sleep studies? Probably not.

Now this is not their fault. They can only operate on the information they have to hand. (BTW I am only talking about the good ones. Bad ones are still crap.)

It is the small changes that often make the difference in treatment. A little bit if pressure here or there, a different mask or even machine. It is impossible for a sleep study to assess a range of changes in one night. It is also prohibitive in cost to test these differences over a number of sleep studies.

I can't afford to keep going to the Doctor to change a pressure or mask or machine. I want to be able to change things over several nights to see what is most effective for ME.

That is why I believe that information and education is the solution to our treatment. Get the software, use the data, make the changes and use the forum. By all means discuss major problems with a professional; otherwise I would rather manage my own treatment.

I hope that was worth the 2 cents.

[carbonman]

My 2 cents worth.
That is why I believe that information and education is the solution to our treatment. Get the software, use the data, make the changes and use the forum. By all means discuss major problems with a professional; otherwise I would rather manage my own treatment.

I hope that was worth the 2 cents.

Very well said!

I just finished reading 3 books on OSA, in my effort to
be as educated as I can be about this entire process.

In all 3 books, there was considerable discussion on the lack
of care received from select sleep docs, sleep labs, and DMEs.
Lack of knowledge in that community and lack of follow-up,
from all of the above.

It was emphasized that the patient would be well advised to
be their own best advocate to receive the best treatment available.

.....well worth the $.02

[Julie]

Hi, while I agree there is a definite chasm between what we need and what DME's etc. provide, I don't think the reason has anything to do with our two-night (if that) test. I think it's because we have very different agendas - we want to be taken care and treated for OSA, the 'establishment' wants to be paid the most, for the least amount of help, and I don't think it's any more complicated than that.

[Insomniyak]

Only been at this for 5 weeks and other than some leaking which I am never going to have 100% normal, It is working fine.

Maybe I am naive, but has anyone ever simply given the doc or the DME there data accompanied with conveying to them how you feel physically, then allow them to make suggestions?? Seems to me like it would be simple. Honestly, I have not had the misfortune that I gather alot of people who find their way here have had with the system.

[Guest]

Hi,

Well thought and take control and stay on top of the treatment!!!!!!!
Is a journey we all cruise together in each of our own star fleet.

Mckooi

[tansey]

I was at the pulmonary specialist yesterday, he is in charge of all OSA patients where I go for medical care. Talking with him I realized he was not up to date on a lot of new cpap gear, for instance he had never heard of a smart card. I spent a good bit of time working up a dissertation on the physical and mental anguish I have been going through lately and that helped him see my situation a lot better, I think I frightened him. He set me up a night in the sleep clinic and a bunch of other tests, gonna change the BP meds.
What I'm getting at is I feel it is so important for the patient to be able to express all that is going on with them, some people aren't capable of that.
I told him about this forum and what a great support goes on here, he was very interested and seemed to have a positive response about what I told him, he wrote down our forum name.

[xyz]

mo:
> I believe that the major problem with the way we are treated by Doctors, DME's, sleep techs, etc is that the treatment they advocate is based on so few nights’ data.

That's why it's important to have an auto machine. It can compensate for some errors in the sleep study and even to some changes in our general health.

That's only part of the overall picture, but it's an important part.

[Slinky]

I don't for a minute believe that the lack of interest and support by the local DME suppliers, their RTs or the sleep doctors has diddley-squat to do w/the fact that they are only working w/one or two nights of data.

What about those of use w/fully data capable devices who printout and bring in the downloads ourselves that the sleep docs just glance over, ask how you are doing and don't pay diddley-squat attention to what the data is telling them IF THEY WOULD LOOK AT IT? Or those who pooh-pooh the data the autos can provide as not being "reliable"?

Or the local DME suppliers' RTs who don't even know how to set up our devices much less what data they can provide? Who just toss the Clinicians Manuals aside or into the trash, set the device up according to the Quick Set Up Guide and have no further interest in learning anything about the very device they are providing and setting up? Or the local DME suppliers' RTs who won't admit to an "I don't know" but would rather tell you something "less than truthful" or even an outright lie rather than take the time to find the answer?

[Perchancetodream]

I'm not sure that the deficiencies are due to limited sleep study results. There are other factors, as have been mentioned by others. The only real solution is to do your own research, follow your own data and become your own best advocate. All of us that have found our way here tend to have already figured that our.

What worries me is the other driver on the road who is being poorly treated, if at all, for his apnea. He is the one most likely to endanger my health.