Scan of my results (what is RERA and UAR?)

caffeinatedcfo · Post by **caffeinatedcfo** » Sat Jun 01, 2013 7:35 am

Wow I would report that to the Hospital's corporate compliance dept. What a joke! Would make me wonder if the report you received is even based on your data.

SleepingUgly · Post by **SleepingUgly** » Sat Jun 01, 2013 7:49 am

caffeinatedcfo wrote:Would make me wonder if the report you received is even based on your data.

I guess that's yet another possible explanation from their noting RERAs, yet having an RDI of 0...

Stormynights · Post by **Stormynights** » Sat Jun 01, 2013 8:40 am

If I remember correctly you said you hardly slept during your sleep study. Maybe you just didn't get enough sleep to get accurate results and need another study.

klutzo · Post by **klutzo** » Sat Jun 01, 2013 10:32 am

Gosh, I am sorry for what you are being put through.

I am no expert on most of this, but I do know an awful lot about fibromyalgia, and UARS is definitely a real thing, and one that is extremely common in fibromyalgia patients, along with 24 hr. a day hypopnea and alpha wave intrusion in to delta sleep. UARS can turn you into a brain-fogged zombie, going through the day trying to function on a brain that is literally in sleep mode. I would not let this drop, but I sure would find another sleep lab pronto. Any doctor who says UARS is not real, is way behind the times and I would move on real fast.

Best of luck, klutzo

SleepyonMagnoliaSt · Post by **SleepyonMagnoliaSt** » Tue Jun 04, 2013 11:03 am

Good news! They've done my referral for the sleep lab I want to go to!!

http://indianasleepcenter.com/

I'll hopefully get a call today or tomorrow to schedule my appointment with the sleep doctor from there.

SleepyonMagnoliaSt · Post by **SleepyonMagnoliaSt** » Tue Jun 04, 2013 11:08 am

I should also let you all know that changing my sleeping schedule has not helped at all. I sleep from midnight to 7-8 am now. I could barely get out of bed this morning. I was so exhausted I fell asleep in the shower *sigh*

SleepyonMagnoliaSt · Post by **SleepyonMagnoliaSt** » Tue Jun 04, 2013 2:58 pm

More of an update. Yesterday I left a sticky note on the hospital lab door and I got a call back just a few minutes ago from a tech. They use the American Academy of Sleep Medicine Recommended Criteria for scoring. This is pretty much all the information I could get out of the tech.

Someone mentioned this somewhere back some pages and I'll go look for it.

caffeinatedcfo · Post by **caffeinatedcfo** » Tue Jun 04, 2013 5:34 pm

SleepyonMagnoliaSt wrote:More of an update. Yesterday I left a sticky note on the hospital lab door and I got a call back just a few minutes ago from a tech. They use the American Academy of Sleep Medicine Recommended Criteria for scoring. This is pretty much all the information I could get out of the tech.

Someone mentioned this somewhere back some pages and I'll go look for it.

Sleeping Ugly mentioned this was the "worthless" scoring method as it does not score RERAs and Hypopneas. So, this just confirms you are doing the right thing getting a 2nd opinion. Did you verify that this new lab uses the Alternative method of scoring?

SleepyonMagnoliaSt · Post by **SleepyonMagnoliaSt** » Tue Jun 04, 2013 6:00 pm

caffeinatedcfo wrote:
SleepyonMagnoliaSt wrote:More of an update. Yesterday I left a sticky note on the hospital lab door and I got a call back just a few minutes ago from a tech. They use the American Academy of Sleep Medicine Recommended Criteria for scoring. This is pretty much all the information I could get out of the tech.

Someone mentioned this somewhere back some pages and I'll go look for it.
Sleeping Ugly mentioned this was the "worthless" scoring method as it does not score RERAs and Hypopneas. So, this just confirms you are doing the right thing getting a 2nd opinion. Did you verify that this new lab uses the Alternative method of scoring?

Yes. I called the new place and told them what was going on and they reassured me they use the Alternative method. I told them that I scored a RDI of 0.0 but RERA's were noted on my notes.

So hopefully this place will help me figure out what's really going on.

caffeinatedcfo · Post by **caffeinatedcfo** » Tue Jun 04, 2013 6:25 pm

You are on your way and I applaud you for sticking with it! Proof that taking control of your own healthcare is so necessary.

SleepyonMagnoliaSt · Post by **SleepyonMagnoliaSt** » Tue Jun 04, 2013 6:35 pm

caffeinatedcfo wrote:You are on your way and I applaud you for sticking with it! Proof that taking control of your own healthcare is so necessary.

It will be really interesting to see what they say and if they retest me what it shows

akcpapguy · Post by **akcpapguy** » Tue Jun 04, 2013 7:15 pm

Did all 15 pages have another patients name on them??

SleepingUgly · Post by **SleepingUgly** » Tue Jun 04, 2013 7:19 pm

caffeinatedcfo wrote:
SleepyonMagnoliaSt wrote: They use the American Academy of Sleep Medicine Recommended Criteria for scoring.
Sleeping Ugly mentioned this was the "worthless" scoring method as it does not score RERAs and Hypopneas.

Actually, the AASM Recommended and AASM Alternative criteria are criteria for scoring hypopneas, not RERAs. The AASM Recommended criteria requires an associated oxygen desaturation and the Alternative criteria does not. So a person who does not desaturate in association with hypopneas, but does have arousals, could have 0 hypopneas scored the Recommended way and theoretically could have many scored the Alternative way.

As for the RERAs, some labs score them and some don't. In some that don't, they may eyeball the data and say that it's "suggestive" of UARS.

Given your situation, it would be better if you'd go to a lab that:

(1) Uses the AASM Alternative criteria for scoring hypopneas, AND
(2) Scores RERAs

When you have your consultation, you may want to ask if there's some utility to your depriving yourself of sleep the night before the test, just to hope to get a bit more REM to explore than what you had last time. It's up to the sleep doc if they'd want you to do that. Make sure they are going to give you information that breaks down the results by REM/NREM and Supine/Non-Supine and the combination (e.g., REM/Supine).

SleepingUgly · Post by **SleepingUgly** » Tue Jun 04, 2013 7:23 pm

If you ever got your raw data on CD, I would hope they would look at it even if they intend to do their own sleep test. If they don't see a lot of events, though, I would still wonder if the teeny, tiny bit of REM you got suggested that events might be more prevalent during REM. You don't want to miss the diagnosis entirely just because your events are concentrated in REM (and hypothetically go 19 freaking years misdiagnosed from the time of a retracted OSA diagnosis until properly diagnosed with OSA again...hypothetically... )

SleepyonMagnoliaSt · Post by **SleepyonMagnoliaSt** » Tue Jun 04, 2013 7:23 pm

akcpapguy wrote:Did all 15 pages have another patients name on them??

No. It was all scanned copies of the papers 'I' had filled out. And then they had the other person's 'result' page. My results page wasn't even in the file. I did call the hospital about it. But ended up leaving 2 voice messages

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