full sleep study report/data disappeared

[oak]

I have restless leg syndrome or periodic limb movements which showed up on my sleep study and which I am trying to get treatment suggestions for.

I fired my primary doc (for various reasons), and am going back to my previous primary doc that i had before i moved, and i am going to see a neuro-sleep doc in the same area.

Today i went to pick up the FULL sleep report at the hospital where my sleep study was done, which I thought would be on CD, for my new sleep doc to review. The sleep tech had told me it was over 1000 pages long.

The medical records dept for the hospital says there is no such thing as a FULL report with graphs, etc., that they have nothing on CD or which could be put on CD, and they have no records except the condensed report, which I got a copy of.

The condensed report is 9 pages with no graphs, all narrative, and very little detail.

So the 1000 page report disappeared into thin air.

I am going to tell the new sleep doc what happened and let them fight with them if they want.

I am so done with these people.

Has anyone else encountered such craziness?

[Dan6]

My reports were only 2 pages long and reviewed by different Sleep Dr's. While I wanted more data, I decided to leave that battle for another day and move forward with treatment. I started out being a real PITA with Dr. and DME, when I toned it down a little bit they both became much easier to work with.

After 9 months I am doing much better so haven't needed any more info. My challenge now is to convince PCP that I need to monitor 02 for a week because I think it may still drop during the night. I am still a little foggy during the day and everything else looks good.

[Ford Guy]

My report was 4 pages and included graphs. I think your Sleep Tech is giving you a line of BS. Ask him to show you the summary and graphs.

[oak]

Sleep techs are only there from 7 PM until 7 AM. no one there during the day. Sleep doc signed off on my (condensed, useless) report but I never met her, and at this point I dont plan to. I am going to "get out of dodge" as fast as I can!

[jazzer4]

I just started taking pramipexole, a generic for mirapex.
It has taken a little over a week, but now it has started to help that "popcorn" feeling in my legs at night.
My sleep doctor ordered the 457 ferritin and the 7573 iron test before prescribing it.
So i'am thinking I have RLS

My sleep study was only 4 pages long also.

Good luck getting all this handled.
I know it's a pain in the neck.

[oak]

I just started taking pramipexole, a generic for mirapex.
It has taken a little over a week, but now it has started to help that "popcorn" feeling in my legs at night.
My sleep doctor ordered the 457 ferritin and the 7573 iron test before prescribing it.
So i'am thinking I have RLS

My sleep study was only 4 pages long also.

Good luck getting all this handled.
I know it's a pain in the neck.

Jazzer have you noticed any side effects from the med yet? are you on a low dose and does it help you get to sleep? mine is a burning sensation and urgency to move.

also what is the 457 ferritin and 7573 iron test?

Is your sleep doctor also a neurologist, or some other kind of doc? Thanks.

[kteague]

At 9 pages, you have much more than a summary. There should be lots of good information in there. The main way the graphs and data might help you at this point is if there is some question as to the accuracy of their interpretation and the validity of your diagnoses. You can do what you want, but I personally think I'd just let a new doctor request that data if they feel they need it. Of course it could prove fun and even enlightening to see what some people on here think about the graphs, but seems to me your moving forward is not going to be hindered by not having those graphs. I've already expressed my concerns regarding options available and the steps I suggest you take regarding your limb movements, so I won't belabor them. Good luck going forward and please keep us informed of what works (or doesn't work) for you.

[oak]

At 9 pages, you have much more than a summary. There should be lots of good information in there.

Nope. Much of it is a regurgitation of my current health conditions and a list of my current medications, and anecdotal information about my reported difficulties with daytime sleepiness and snoring. It also has half a page about good sleep hygiene habits. As you say, I will just move forward and if the sleep doc wants more info on the PLM's they can request it themselves. I just hope others do not have this kind of run around while trying to get healthy!

[kteague]

I just hope others do not have this kind of run around while trying to get healthy!

Unfortunately, some get the runaround just getting the summary report.

[mollete]

So the 1000 page report disappeared into thin air.

To be clear, the 1000 pages do not comprise the "report"-- rather, that is the raw data with scoring annotations.

And it is not 1000 "pages" in the literal sense, it is more appropriately 1000 computer screenshots, and while they are pretty busy, they only total about 140 meg (without the video and audio).

[mollete]

BTW, they like to say "1000 pages" to make it sound daunting and discourage any further pursuit of the issue.

Actually, it only takes about an hour to give it a pretty thorough review.

[oak]

well whatever it is, they wont give it to me on CD or otherwise. this trying to get records has been a complete farce.

[JDS74]

I just talked to a sleep tech friend about what data I could get from an ASV titration sleep study.
I have some very particular data interests related to what might be collected and be related to a different medical problem.

They collect ECG data for the whole night,
Video for the whole night,
breathing data,
etc., etc.
And it is all available if you request it in the following few days after the study. Their lab dumps all that data after one week.
So, concievably, all that might look like 1,000 pages if recorded to several DVD's.

So it is likely it existed and now no longer does. I suspect it is kept in case the sleep doctor needs to review something that happened during the study but is considered no longer relevant after the study report is final.

[oak]

thanks JDS.

[mollete]

Their lab dumps all that data after one week.

By "dumps" do you mean "destroys"?

What state is this person in? Is that laboratory accredited by the AASM? While medical record retention duration is usually decided by the state where the laboratory is located, I believe the generally accepted practice to be 7 years, or 7 years after the Age of Consent (with the possible exception of the video recording).