12 years on cpap and it's time to move on.

Pugsy wrote: Better than nothing I suppose on paper but based on how I felt....worthless. I want to "feel" better and not just "look better on paper".

That's the key thing to keep in mind when reading studies about any procedure (or drug or whatever). Researchers usually have a very different view of what is statistically significant, and that view often has very little relationship to the real world. In this case, it is entirely possible that a study could show that some device or implant on average reduced AHI by 50% or more, but that number is really meaningless if it leaves someone with an AHI of 45 after reducing it by 50%. There are any number of ways that results can be written up in conclusions that obfuscate the real results; not saying that this study has done that (I haven't read it), just say that it is VERY common.

The way that research findings can be written up after being statistically massaged is both fascinating and frightening. Don't know about this particular study, but in general it's a really good idea to wade through the actual findings and not just accept the researcher's conclusions--those conclusions can be biased from the outset or influenced by who is funding the study or what is politically correct at the time of the study.

Weezy

@ Pugsy - My point exactly

@ DocWeezy - I agree with you whole-heartily

The efficacy of this device is relevant to those considering it (and interesting to those of who are not). How hard any given individual tried to make CPAP work before turning to this device is irrelevant, IMO. It may be a criteria for study inclusion, but it's really not important for our purposes, UNLESS there was reason why the device would only be effective in those who had failed CPAP, which I doubt very much.

You're right SU - I stand corrected

While this particular procedure doesn't (right now) offer me what I would want, it sure might offer other people what they want. This forum is composed of cpap users who for the most part have adapted fairly well to the use of the machine so we really have a much higher standard of sorts to make something appeal to us. So we are unlikely to want to jump on the band wagon but that doesn't mean that we should be totally negative towards someone that does.

I feel that it is always within a person's individual right to take whatever road they want to take.
It's not my job in life to throw out roadblocks no matter what road someone chooses.

I absolutely hate, hate, hate full face and over the nose masks. If I couldn't use a nasal pillow mask I would be in a world of hurt. Then that 50% reduction in AHI might seem a lot more appealing if I couldn't use a nasal pillow mask because I sure as heck can't/won't use the other types. If my desats stayed in upper 80s instead of lower 70s...the procedure might seem appealing if I had no other choice.
Someone who uses a full face mask successfully would no doubt roll their eyes when I say I hate them.....in their mind they think... "hey, it works great for me and I love it" and they just can't get a grasp on why I hate them so bad. I have my reasons and while they may not be important to someone else...they are very important to me.

I look at this alternative treatment the same way. Whatever reasons someone has for opting to try this new procedure...I am sure that those reasons are extremely important to them. While I might roll my eyes behind the screen, I do respect that it is their right to have those reasons and not my place to tell them that their reasons might be something that could be fixed with something else.

DocWeezy wrote: The way that research findings can be written up after being statistically massaged is both fascinating and frightening.

This is said with great love, because Ronnie (and a number of our friends) do this for a living, but research results are too often "bent".

A few consciously, the vast majority, unconsciously.

Take every study you read with a huge grain of salt.

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Never rely on the abstract, as most over-worked clinicians do when scanning the literature.

The abstract and underlying study often do not match.

Finally: If it's important enough to you, pick up the phone and call the dude. (or dudette).

Most researchers will give you a much clearer (and updated) view of their work than someone who has scanned a bunch of abstracts.

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SleepingUgly wrote: How hard any given individual tried to make CPAP work before turning to this device is irrelevant, IMO.

To the contrary, I have been following this thread since it started and I think that (how hard tried) is the point and it is especially the point for newbies.

Since Corky appears to know very little about CPAP and how to solve problems with CPAP therapy, I will say the context for newbies is one of these options:

1. Flounder around with CPAP (for 12 years????); fail to understand your diagnosis (Corky doesn't remember his AHI); fail to educate yourself about CPAP and sleep apnea; fail to have a support group such as cpaptalk; fail to learn tweaks and tips for troubleshooting; fail to have the software and know how to use it; etc. and then undertake a very expensive and invasive surgery.

-or-

2. Make a commitment to CPAP; educate yourself about sleep apnea and your particular diagnosis; educate yourself about CPAP and get a machine with software; use a support group to learn tweaking and troubleshooting; and have no need to undergo an expensive and invasive surgery.

So yes, "how hard you tried" is the issue.

I'll retrack on last statement, "I stand corrected".

@ ChicagoGranny - You articulated EXACTLY my thoughts. Thank you.

Starlette wrote:@DeltaDave - Can you explain the meaning of your graph (Arousal Index - Colored Blue) please? If I'm understanding it correctly, a person with let's say 45 AHI, is reduced to 25 AHI 3 months later is that correct? What is not clear is where this data is coming from: someone who is on xpap, using no therapy or after having procedure done. Where did you get this graph from?

From the Apnex website:

http://www.apnexmedical.com/subindex.as ... DC811064BF

The Arousal Index, tho, is not the same as the Apnea Hypopnea Index. While nearly all apneas and hypopneas are terminated by arousals, this is not required. However, it is the arousals, causing breaks in sleep continuity, that cause the daytime sleepiness.

Also, there are other things that cause arousals, like PLMs and the miscellaneous bucket (or "spontaneous" arousals).

One of the concerns of this type of therapy is that it will cause additional arousals. So the skeptical me is asking "Was the study group selected such that were few 'light' sleepers, who might jack the arousal index out of sight?" There is a slight suggestion of this.

More important, what happens if you put this on a "bad" sleeper (the aforementioned <75% sleep efficiency)? Will this thing drive 'em crazy?

debtheveg wrote:You quite clearly would not use or do anything other than your cpap ...

Actually, I don't use CPAP-- at least not in the way you might think.

deltadave wrote:

debtheveg wrote:You quite clearly would not use or do anything other than your cpap ...

Actually, I don't use CPAP-- at least not in the way you might think.

Dave has a CPAP fetish, so he uses CPAP in ways you never would have dreamed of...

DocWeezy wrote:
The way that research findings can be written up after being statistically massaged is both fascinating and frightening. Don't know about this particular study, but in general it's a really good idea to wade through the actual findings and not just accept the researcher's conclusions--those conclusions can be biased from the outset or influenced by who is funding the study or what is politically correct at the time of the study.

Weezy

Ha yes. I spent a summer working for the statistics department of the department of Agriculture of Canada way back in my university days. I was doing a degree in stats so I spent about half my times squeezing numbers through programs to make them look like sine curves, the other half of the time I spent writing software for different kinds of statistical computations. At the end of the summer I was totally disillusioned about stats and switched to programming.

BlackSpinner wrote:I spent a summer working for the statistics department of the department of Agriculture of Canada way back in my university days. I was doing a degree in stats so I spent about half my times squeezing numbers through programs to make them look like sine curves, the other half of the time I spent writing software for different kinds of statistical computations. At the end of the summer I was totally disillusioned about stats and switched to programming.

Oh boy, a maff person!

Ms. Maff Person, can you explain, in the study under discussion now:

Results:

Nineteen of 21 participants had baseline and 6-month PSGs. There was a significant improvement (all P < 0.05) from baseline to 6 months in: AHI (43.1 ± 17.5 to 19.5 ± 16.7)

the effect that 2 dramatic responders (AHI 90 to 25 and AHI 70 to 15) has on the results?

TIA.

SleepingUgly wrote:

deltadave wrote:

debtheveg wrote:You quite clearly would not use or do anything other than your cpap ...

Actually, I don't use CPAP-- at least not in the way you might think.

Dave has a CPAP fetish, so he uses CPAP in ways you never would have dreamed of...

Actually, when you think about it, maybe she would...

Speaking of arousals... Just read that there isn't a correlation between the ASDA arousal index and sleepiness (citing Kingshott et al., 1998). How can this be?!