Sleep Study Results - Hmmm...

[Madalot]

I had called a sleep lab locally and on the phone, they were very open and willing to help me however they could, even saying that getting my ventilator in to do the study wouldn't be any problem at all. But my doctor shot that idea down, stating she would only get a summary and wanted to see the actual data.

She was (and is) very mistaken in her notion about the amount of data another sleep lab would provide her, even all the way to letting her have a CD of the raw data, every single epoch recorded during the sleep study -- and the software to view it -- if she wanted to see that amount of detail. Not that she, or any doctor not board certified in "sleep medicine," could understand PSG raw data.

I think she would have received all/more "actual data" than she could possibly want to see -- especially from a sleep lab that was "willing to help me however they could" and that said "getting my ventilator in to do the study wouldn't be any problem at all."

But that's water under the bridge.

Doctors are human.

Humans can be stubborn about misperceptions.

Yep. And with as much politeness and "butt kissing" I can muster, I am going to point this out to her.

Another thing I'm going to POLITELY try to make clear to her is that there seems to be a lot of, uh, "nothing I can do" from both sides. The lab says they HAVE to do exactly what the doctor orders, yet the lab refused to do certain things my doctor wanted. That leaves me where I am right now -- a sleep study that isn't addressing the core of my complaints and giving me recommendations that aren't valid and don't make any sense.

[Slinky]

GO SOMEWHERE ELSE!!!! Your doctor has obviously run out of ideas. She's at her wits' end. She's given it the ole college try and didn't and doesn't have the facility to work w/her.

[Madalot]

GO SOMEWHERE ELSE!!!! Your doctor has obviously run out of ideas. She's at her wits' end. She's given it the ole college try and didn't and doesn't have the facility to work w/her.

It may very well come down to that. I would have gone elsewhere long ago if not for my neurologist (my new one, who is VERY well respected) telling me she is THE best I could get. She may be the best when it comes to non-invasive ventilation, but I'm realizing when it comes to sleep medicine AND working with the lab she's affiliated with -- well...I won't go there.

[jnk]

I don't remember if anyone has linked to these lately, but for those following the thread, these articles give some general overviews that may be helpful for understanding similar situations, even if the articles are a few years old and therefore don't mention AVAPS, etc.:

http://quest.mda.org/print/419

http://www.sanp.ch/pdf/2003/2003-07/2003-07-082.PDF

[Madalot]

I don't remember if anyone has linked to these lately, but for those following the thread, these articles give some general overviews that may be helpful for understanding similar situations, even if the articles are a few years old and therefore don't mention AVAPS, etc.:

http://quest.mda.org/print/419

http://www.sanp.ch/pdf/2003/2003-07/2003-07-082.PDF

Thanks for posting these. I read the quest article here I think, but then got the magazine that had it too (I get it every time they send them out).

It does help people, including me, really understand this.

Appreciate the help.

[jbn3boys]

If I had to guess -- I'd say that pressure wakes me up while on my side (sometimes) making it difficult for me to get into a good, deep sleep. And once I finally do get into a deep sleep, limb movements are bothering that sleep and I'm waking up from that.

Any takers on this?

Yep! I'm a taker! That makes perfect sense to me!

[Madalot]

I've spent part of the weekend, on and off, looking at the graphs I was sent and remembering how things went. I can relay what was happening with me during EVERY position change. It seems pretty obvious to me that SOMETHING is not right. If you LISTEN to the fact that *I* only tried to spend about 15 minutes on my back - and only did that because I was NOT sleeping well on my left side - which you can see from the fact that I woke up a lot during those two hours and barely got to N3, and that there was very little REM sleep during the entire night. Plus, you add the leg movements, which were never mentioned in my first two studies, nor mentioned at all in the summary for this one --

I'm very frustrated that I'm getting the answer about back sleeping. It doesn't make sense.

Am I wrong to feel this way? Am I wrong to think there is so much more that is OBVIOUS in these graphs?

[Slinky]

NO! GO SOMEWHERE ELSE! I know it is a distance but National Jewish in Denver sounds so right up your alley given the muscle problem as well as the diaphragm problem as wel as the sleep problem ..... take a vacation and GO THERE.

WHERE is that clinical trial you may be accepted into going on? Maybe THEY can recommend some place closer by than National Jewish. Tell THEM you are considering going to National Jewish even if you aren't and ask if they can recommend any place closer w/that kind of expertise.

READ the posts that RestedGal found for us - for YOU actually - by Googling for dllfo Jewish site:cpaptalk.com which turns up a lot of his posts about his trip to Colorado. You are doing yourself a real disservice if you don't.

[Madalot]

NO! GO SOMEWHERE ELSE! I know it is a distance but National Jewish in Denver sounds so right up your alley given the muscle problem as well as the diaphragm problem as wel as the sleep problem ..... take a vacation and GO THERE.

WHERE is that clinical trial you may be accepted into going on? Maybe THEY can recommend some place closer by than National Jewish. Tell THEM you are considering going to National Jewish even if you aren't and ask if they can recommend any place closer w/that kind of expertise.

READ the posts that RestedGal found for us - for YOU actually - by Googling for dllfo Jewish site:cpaptalk.com which turns up a lot of his posts about his trip to Colorado. You are doing yourself a real disservice if you don't.

LOL -- I've read the posts and definitely appreciate what National Jewish could offer.

I'm sorry -- but I Colorado is just out of the question.

BTBS -- I know I have other options - good ones. I'm not overly concerned about finding a better place. I AM prepared to do that and I've already pretty much decided what I will do if my doctor refuses to listen to me. I've already decided that there is no way I will do another sleep study at her facility. That's done.

What may need to happen is separating the treatment of the respiratory issues from my disease from my sleep issues. But I should have a doctor that is able to treat both effectively.

I DO get that...and I AM at the point where I'm prepared to make a change if she can't step up.

[robysue]

If you LISTEN to the fact that *I* only tried to spend about 15 minutes on my back - and only did that because I was NOT sleeping well on my left side - which you can see from the fact that I woke up a lot during those two hours and barely got to N3, and that there was very little REM sleep during the entire night.

Do you have the summary of the pressure graph (i.e. the graph that reflects the machine's settings) for the night? Your theory about the pressure increases waking you up and preventing you from getting into a sound deep sleep sounds reasonable to me, and one piece of evidence would be if there were a correlation between increases in the pressure graph and the awakenings shown in the hypnograph.

Plus, you add the leg movements, which were never mentioned in my first two studies, nor mentioned at all in the summary for this one --

I'd ask this question politely, but point blank at the doctor: Please tell me why you are ignoring these obvious clusters of limb movements during REM on this test.

And do you have the graphs for your previous two studies? If so, are there any clusters of limb movements in them? Particularly during REM? In that case, ask the question more generally: All three sleep studies show that I had some significant clusters of leg/limb movements during REM. Please tell me why you are ignoring these obvious clusters of limb movements during REM on all three studies.

I'm very frustrated that I'm getting the answer about back sleeping. It doesn't make sense.

Am I wrong to feel this way? Am I wrong to think there is so much more that is OBVIOUS in these graphs?

Short answer? No, you are NOT wrong to think there's much more that is OBVIOUS in these graphs.