A Question re: my AUTOPAP Trial

Muffy wrote:

BleepingBeauty wrote:I'm still taking notes from both you and SAG...

It's "Muffy"! Do you think SAG would be dressed up like this?

Oops! I didn't mean to step on your pretty pedicure, Muffy, dahling. (Why don't you post a pic so we can all see? I won't laugh, I promise. )

Muffy wrote:A retrospective foregone conclusion!

I like that. It has a nice ring to it. Perhaps a good title for a book about the current state of the economy. (Paul Krugman, are you paying attention?)

Muffy wrote: If you were following the advice of some guy on the internet dressed up in a flowery chiffon jumper, I think you'd have a problem at the trial.

C'mon, post a pic!

Seriously, though, I shouldn't have even asked that question, and I won't be changing any settings on my own. (If I was of a mind to fiddle with the settings, I'd have started doing that a long time before now.) As I said to -SWS upthread, a couple more weeks at my current setting won't kill me. I'm just impatient to get on with good therapy already.

Muffy wrote:

BleepingBeauty wrote:Is there any way to tell whether a pressure transducer was used, from the paperwork generated?

Not unless they specifically say it, or the actual study is reviewed.

Ok. Well, there's nothing saying that, specifically.

Muffy wrote:

BleepingBeauty wrote:Under the "Summary" written by the tech, it says, "The patient had DBE's with and without arousals and/or desaturation. The patient had a sinus rhythm." I don't know what any of that means, but I'm sure it means something to you.

You're correct.

Doh! Now, are you gonna tell me what "DBE's" means? And while you're at it, what's the significance of a "sinus rhythm?"

Muffy wrote:

BleepingBeauty wrote:I remember asking the RT at the DME about positional therapy (i.e., staying off my back), and he said that it wouldn't matter what position I slept in once I was on the machine. Is that true?

It would if the selected pressure addressed all of the various above-noted combinations and permutations without generating additional issues.

In other words, in my case, the RT was wrong to make that statement. Right? He had the summaries from my sleep studies, which noted the centrals and the Cheyne-Stokes. Even your average dolt wouldn't interpret that as "purely obstructive," would they? Could they?

Muffy wrote:

BleepingBeauty wrote:And if so, why would any doctor recommend positional therapy, ever?

In purely obstructive disease (which occurs at least 85% of the time, but Muffy thinks the incidence of problem-generating CompSAS is inflated if one lists it at 15%) it's a heckuva lot easier to define, you pretty much just have to look at position vs sleep stage.

Muffy

Ok. But since we know that (purely obstructive disease) is not my diagnosis, positional therapy might be an important factor for me, and I should make efforts to stay off my back when sleeping?

Am I understanding correctly, or is my lack of good quality sleep showing again?

Thanks, as always, for your indulgence.

BleepingBeauty wrote:

Muffy wrote:

BleepingBeauty wrote:Under the "Summary" written by the tech, it says, "The patient had DBE's with and without arousals and/or desaturation. The patient had a sinus rhythm." I don't know what any of that means, but I'm sure it means something to you.

You're correct.

Doh! Now, are you gonna tell me what "DBE's" means? And while you're at it, what's the significance of a "sinus rhythm?"

Muffy got her quirky sense of humor from SAG.

I'll take a guess, but that's all it is...a guess ...

"DBE's" -- since arousals and desat were mentioned, I'll guess "Disordered Breathing Events." Events like flow limitations, hypopneas, apneas.

"Sinus rhythm" - heart beating in a normal rhythm, maybe?
http://www.medterms.com/script/main/art ... lekey=9741

rested gal wrote:

BleepingBeauty wrote:

Muffy wrote:

BleepingBeauty wrote:Under the "Summary" written by the tech, it says, "The patient had DBE's with and without arousals and/or desaturation. The patient had a sinus rhythm." I don't know what any of that means, but I'm sure it means something to you.

You're correct.

Doh! Now, are you gonna tell me what "DBE's" means? And while you're at it, what's the significance of a "sinus rhythm?"

Muffy got her quirky sense of humor from SAG.

I'll take a guess, but that's all it is...a guess ...

"DBE's" -- since arousals and desat were mentioned, I'll guess "Disordered Breathing Events." Events like flow limitations, hypopneas, apneas.

"Sinus rhythm" - heart beating in a normal rhythm, maybe?
http://www.medterms.com/script/main/art ... lekey=9741

Hi, RG. Yeah, that Muffy's one twisted sistah (and I appreciate that!).

I did a quick search on WebMD for "sinus rhythm," and you're correct. Your stab at what "DBE" means is sensible and most likely right-on. I searched my online Sleep Disorders Guide glossary (http://www.sleepdisordersguide.com/slee ... ary-a.html, if anyone wants to bookmark it), but I can't find anything on there.

Many thanks.

Well, my ex-doctor's office got my Certified Mail request for "a complete copy of the detailed report from my autotitration trial of April 9-16, 2009" on Friday, 4/24. The same day, they mailed me the (ahem) report - comprising four pages out of twelve; i.e., just the compliance summary data, no daily details. They must think I'm really stupid. (Tired? Yep. Dumb? Far from it.)

Across all four of the pages sent is a handwritten disclaimer that the report is "invalid" because "patient changed parameters..." I'm only going to scan and upload page 11, the Summary of Data Details. AFAIC, the rest is useless (to me or anyone else), but if anyone here thinks otherwise, let me know. The Summary can be found here.

FYI, page 12 lists the following REMstar Auto Statistics:

Auto-CPAP Mean Pressure: 10.0 cm
Auto-CPAP Peak Average Pressure: 11.3 cm
Average Device Pressure <= 90% of Time: 14.0 cm
Average Time in Apnea Per Day: 13.6 mins.
Average Time in Large Leak Per Day: 1.7 mins.
Average AHI: 13.4

To the Clinical Director:
Okay, lady. Since I'm sure you're still reading my messages on this forum, here's one just for you: You're barkin' up the wrong tree if you think you can thwart my efforts to rightfully obtain my records. I hope the doctor is aware of how you're behaving, because HE'S ultimately responsible for YOUR b.s. This ain't over, by a long-shot.

In the meantime, here's a shovel:



Be my guest and keep diggin'.

rested gal wrote:"DBE's" -- since arousals and desat were mentioned, I'll guess "Disordered Breathing Events." Events like flow limitations, hypopneas, apneas.

And I would guess that anyone using that acronym uses the Sandman sleep analysis software package with its DBE search engine (on-the-fly respiratory event scorer).

That download shows 35.2% of treatment time spent on 7.0 cmH2O with AHI 5.0. Sure makes you wonder.

Muffy

Also:
She's having a disproportionate number of snores on 7(10 time as many snores on 7 than on 8, and that's for about 5 times as much time), and non-responsives above 10 (at 11, 13 and 14)....

O.

ozij wrote:She's having a disproportionate number of snores on 7(10 time as many snores on 7 than on 8, and that's for about 5 times as much time)

So if there are 7 distinct sessions, that's an average of 2.03 hours on 7.0 cmH2O per session (them 420 people like to say "sessions" instead of "nights"), so if that thing was set for SNS at 2 hours, it pretty much took off once the gate opened.

ozij wrote:and non-responsives above 10 (at 11, 13 and 14)....

Muffy thinks you should take that NR algorithm and throw it out the window.

everybody is thinking, but didn't wrote:With AHI 3.8 at 8.0 cmH2O, that sure looks appealing

The down side is there's only an average of about 18 minutes a night.

BleepingBeauty said the Clinical Director wrote:the "good news" is that the report indicates that I'm at the right pressure of 14.

Hey CD! How did you determine that? By the infamous 90%?

The Clinical Director wrote:Invalid report

Could you be a little more specific?

Muffy

Right, she was she was stuck on 7 because of the setting (Split Night Study) and apparently zoomed out of 8 because of the snoring.
When you suggest throwing out the NR algorithm, what do you mean?
That it's meaningless (them there apnea are not non-responsive), or not sensitive enough (she's probably got a whole lot more pressure induced apneas)?

O.

rested gal wrote:Muffy got her quirky sense of humor from SAG.

She obviously got more than that.......SHE sure is smart!




OK.......I'll take my shovel and go, now......

(these types of discussions get too deep for me to participate in, even though I have some understanding of the concepts)

Den

.

ozij wrote:Also:
She's having a disproportionate number of snores on 7(10 time as many snores on 7 than on 8, and that's for about 5 times as much time), and non-responsives above 10 (at 11, 13 and 14)....

O.

I agree that a fixed pressure of 8 may also be interesting to explore.

ozij wrote:She's having... non-responsives above 10 (at 11, 13 and 14)....

ozij wrote:When you suggest throwing out the NR algorithm, what do you mean?

The NRIs at the pressures you noted:



are 0.8, 0.5 and 0.7. Are you telling me those are are significant values?

Meanwhile, The Muffburger is creating The Longest Response in Board History.

Muffy

Well, lo and behold, guess what was in my mailbox today? The missing detail pages from the autopap trial.

Hey, CD: I'm glad you're reading these posts, because you've apparently learned something about how NOT to make a bad situation worse. You're just too cute, though (as in devious and deceptive). Backdating your postage meter so it looks like you mailed these missing pages to me on 4/27? Pretty slick, I must say. I know the P.O. is slow sometimes, but do you really expect anyone to believe it took five days to reach me by mail, 50 miles away? BTW, when you refused to send me these pages, I filed a Complaint with the AZ Medical Board to obtain them, so you can expect to hear from them, if you haven't already.

For the rest of you nice (and helpful) people on the forum, the Daily Details can be found here: http://s675.photobucket.com/albums/vv12 ... ls%204-09/

FYI, for the night of the 12th, there are two pages. I couldn't fall asleep for the longest time and kept waiting for the "ramp" to boost up. When it didn't, I took the mask off and left it on my pillow for quite awhile to see if that would up the pressure more quickly, but nothing changed. (This was obviously before I knew there was no "ramp" function at all.) So there are two printouts for that one night, since it didn't record anything while the machine was blowing 7cm and the mask was sitting on the pillow. Oh, and not that it makes any difference, but the time on the machine was apparently set about 1.5 to 2 hours earlier than reality. (Makes me wonder if they ever set anything properly at that office...)

Anyway, it appears to my untrained eye that my chinstrap is doing its job. But I have to wonder how I can be snoring if my mouth is closed.

Well, have at it, kids, and let me know what you think. Thanks.

Well, let's throw this one up for starters. It's the first detailed report available. You can see the pressure sitting at 7 cm for exactly 2:00 hours. So the machine was set up in split-night mode. And exactly as SAG mentioned, that 7 cm data is very telling.

Look what happens just as soon as APAP modality is allowed to adjust that static pressure: once again you start to look like the CompSAS/CSDB poster child, as APAP modality does its thing. The apneas just go through the roof...

Despite having other nights with a 2:00 hour 7 cm split study, the above is your best representation of CompSAS/CSDB of the complete set. Regardless, the other reports show a typically episodic CompSAS/CSDB tendency to score more apneas at sustained higher pressures. There's a lot of snore sitting at 7cm, as well as apneas on some nights. I'm thinking an ASV trial is looking likely---especially with the night-to-night variation you show.

Short of an ASV trial, extended-run fixed pressure trials are probably the best way for you to go---but not APAP trials with that CompSAS/CSDB issue you have somewhat randomly spoiling the show.

-SWS wrote: Well, let's throw this one up for starters. It's the first detailed report available. You can see the pressure sitting at 7 cm for exactly 2:00 hours. So the machine was set up in split-night mode. And exactly as SAG mentioned, that 7 cm data is very telling.

Look what happens just as soon as APAP modality is allowed to adjust that static pressure: once again you start to look like the CompSAS/CSDB poster child, as APAP modality does its thing. The apneas just go through the roof...

I know. All that solid black on the graph, as soon as the pressure increases, is freaky. And then it happens again, later on.

Despite having other nights with a 2:00 hour 7 cm split study, the above is your best representation of CompSAS/CSDB of the complete set. Regardless, the other reports show a typically episodic CompSAS/CSDB tendency to score more apneas at sustained higher pressures. There's a lot of snore sitting at 7cm, as well as apneas on some nights. I'm thinking an ASV trial is looking likely---especially with the night-to-night variation you show.

I found it confusing to see the differences, night-to-night. The numbers are all over the place. AHI of 41.1, 11.1, 5.3, 12.0, 8.8, 6.9. And what's with the snoring while I'm wearing a chinstrap? How can that happen?

Short of an ASV trial, extended-run fixed pressure trials are probably the best way for you to go---but not APAP trials with that CompSAS/CSDB issue you have somewhat randomly spoiling the show.

Yeah, I'll be happy to forever ditch the prospect of being treated with an autopap, as each trial period with one has been hellish. I'll see what the new doctor wants to do and will let you know what's what after I meet with her. Every day that passes is another day closer to my new treatment plan.

Thanks, -SWS.

BleepingBeauty wrote:And what's with the snoring while I'm wearing a chinstrap? How can that happen?

I can deliberately make loud snore sounds inhaling through my nose with mouth closed. Can do that sitting wide awake right here at the computer. Sorry to admit that, but I can.

On another note, the Clinical Director's chirpy "good news" ....

BleepingBeauty wrote:I called the doctor's office this morning to find out if they had mailed me the detailed report yet, since I returned the machine to them six days ago. The Clinical Director got on the phone and told me that the "good news" is that the report indicates that I'm at the right pressure of 14.

... is laughable for several reasons, not the least of which is when you look at how you were hitting 14 for long periods EVERY night (except the last short night's short session) and were still racking up a long term average AHI of 13.4.

If the machine's maximum pressure had been set higher, there's no telling where you'd have finally bumped your head each night, and what Ms Clinical Director would have declared to be "the right pressure."

It really is a good thing you'll be seeing a new doctor soon.