How can you really trust your numbers?

[andyomega]

I have been reading this site for a while now and it seems alot of people depend on the feed back you get from your machines.
How can these machines accurately report your AHI when all they can do is detect flow rate and pressure?
Do you really feel as good as the machines says you should?
Or is there some placebo effect happening here?

I think an oximeter that records to the PC would be very helpful in getting actual effectiveness data. On my PSG for example, I can correlate O2 drops directly with hypopnea events. So in theory, I think an oximeter would be much better than looking at average AHI as told by the cpap machine.

I am currently looking for a decent oximeter so I can put my theory to work.

What are your thoughts about all this?

[Goofproof]

My machine gives me all I need to know along with changes in how I feel. The Encore Pro software, tells you what happen and when it happened. As you say it measures flow. that's what Apnea is about, no flow, or not enough.

O2 levels are another way, Mr. Skinner's software is very helpful, I like the way it shows the time spent in Apnea, and the avg length of Apnea events. It's a Poor Man's Pulse Ox. That's a major piece of info Encore Pro doesn't make clear, and probably the most important.

The best thing monitoring with software does, it replaces having to have a nurse and ventilator hooked up to you. Jim

[Wulfman...]

I don't think anybody here would claim them to be totally "accurate". I think they report a number of false positives.....meaning that some of the numbers might be a little high.
BUT.....they're the best "tool" we have, short of having a full-blown PSG every night, and I don't particularly want to have a pulse-ox clipped to my finger every night, either. So, I consider mine to be a "yardstick". I CAN relate what my nightly data shows to how I feel.....but I need to get ENOUGH sleep, too.
Your pulse-ox doesn't show snores or mask leaking......the Encore Pro software will.

To me, it also serves another purpose.....PROOF of my therapy (if it should ever come up in an insurance or other situation).

Den

[andyomega]

Who is Mr. Skinner? How does his software work and how can I get a copy of it?

[Wulfman...]

His forum username is "Jskinner".
Do a search on him or look through the forum pages.....he ain't hard to find.

Den

[Gerald]

Jskinner is one heck of a nice guy......and he offers his "Analyzer" software free of charge to anyone who needs it. I downloaded it....I love it.....and I sent him some bucks to help him maintain / improve it.

You need EncorePro software plus a card reader before you can use Analyzer. Make the effort to get EncorePro software....even if you have to purchase it on the black market. You should be able to get by with version 1.6 if you're using XP as your operating system. If you're now using Vista, you'll need version 1.8. The card reader is available from somewhere in China.....somebody on this forum has already posted the name of the outfit.

Without both software programs and the card reader, you're essentially "running blind".....which is what the "medical establishment" wants. Pressure from the "establishment" caused Respironics to withdraw their software from the marketplace.....much to the disgust of their knowlegeable customers.

[andyomega]

Without both software programs and the card reader, you're essentially "running blind".....which is what the "medical establishment" wants. Pressure from the "establishment" caused Respironics to withdraw their software from the marketplace.....much to the disgust of their knowlegeable customers.

I agree with this and find it desgusting that they take away our power to help ourselves however, has anyone been able to verify that the machines data is accurate and not just a rough estimate of effectiveness ?

Maybe they have taken the software off the market because its really not that good?

[NarcoApneac]

These machines have to be able to tell when you are breathing in and out in order for C-Flex and EPR to be able to work, and these exhalation relief methods do indeed work. So since these machines can tell when you are breathing, they can certainly tell when you are not, and hence they can report apneas and hypopneas with at least some degree of accuracy.

Also, at least a few users have reported that their oximeter reports closely correlate with their xPAP reports.

Snore detection seems to be the most controversial issue. My Respironics machine reports residual snores where no snores can be heard, whether I'm awake or asleep, and for me the Snore index depends highly on whether or not a humidifier is in the system, and on hose length.

There are many reasons why correcting sleep apnea doesn't make us all feel great immediately. For instance, many health problems have little to do with apnea at all.

I think that having the numbers is a lot better than flying blind. Good luck.

[Wulfman...]

Without both software programs and the card reader, you're essentially "running blind".....which is what the "medical establishment" wants. Pressure from the "establishment" caused Respironics to withdraw their software from the marketplace.....much to the disgust of their knowlegeable customers.

I agree with this and find it desgusting that they take away our power to help ourselves however, has anyone been able to verify that the machines data is accurate and not just a rough estimate of effectiveness ?

Maybe they have taken the software off the market because its really not that good?

If it wasn't "close", ResMed, Respironics and Puritan Bennett wouldn't have put as much money out to develop it, released it or have been selling/supplying it to ANYBODY. It was designed as a diagnostic tool for the medical professionals. The XPAP "users" weren't supposed to be using it......but due to some of the very kind online sellers, we were able to have access to it for awhile.

It's as good as the sensors in the machines. It's a "TOOL".

Why do you keep doubting this?

Den

[John_M]

Who is Mr. Skinner? How does his software work and how can I get a copy of it?

Jame Skinner profile.php?mode=viewprofile&u=11111 explains all about Encore Pro and how to get hold of Encore Pro Analyser at http://sleepapnea.wikia.com/wiki/Encore_Pro

John M

[jabberwock]

What I really can't figure out is why the manufacturers put the money into developing software at all! They apparently don't want the patients to have it, but I have yet to hear a story of any DME or sleep doc who actually uses the software data to help with their patients' therapy. Most reports I have seen said that the only data the DMEs or doctors look at is compliance and many have either never seen or don't know how to interpret the most useful data.

I get the feeling that maybe the software was developed for use by patients, but then made off-limits by the manufacturers when pressure was exerted by the DMEs who screamed bloody murder for fear of becoming redundant...

Bonnie

[Goofproof]

Without both software programs and the card reader, you're essentially "running blind".....which is what the "medical establishment" wants. Pressure from the "establishment" caused Respironics to withdraw their software from the marketplace.....much to the disgust of their knowlegeable customers.

I agree with this and find it desgusting that they take away our power to help ourselves however, has anyone been able to verify that the machines data is accurate and not just a rough estimate of effectiveness ?

Maybe they have taken the software off the market because its really not that good?

It's not Rocket Science, the numbers don't matter as much as seeing trends and adv. If it's off by 20%, that means it's 80 % better than not having a clue. Not having a clue is where you are at without the correct machine and data. Jim

[neversleeps]

Without both software programs and the card reader, you're essentially "running blind".....which is what the "medical establishment" wants. Pressure from the "establishment" caused Respironics to withdraw their software from the marketplace.....much to the disgust of their knowlegeable customers.

I agree with this and find it desgusting that they take away our power to help ourselves however, has anyone been able to verify that the machines data is accurate and not just a rough estimate of effectiveness ?

Maybe they have taken the software off the market because its really not that good?

Take a look at this study from 2003:

Nonattended home automated continuous positive airway
pressure titration: Comparison with polysomnography

Here are some snips (bold emphasis is mine):

It is the goal of this current study to retrospectively examine the clinical performance (adequacy of therapy and accuracy of device reports) in a non-attended home setting using an APAP device (Autoset) and to compare it with simultaneous 16-channel PSG.

The nasal APAP titration machine overestimated the AHI compared with PSG by an average of 1.4 events/h (6.5 [8.2] versus 7.9 [7.4]
events/hr). The nasal APAP titration AHI correlated highly with the polysomnographic AHI.

Nasal APAP titration in this study correctly identified residual apnea equivalent to the use of PSG. This correct identification allows the physician to accurately access the efficacy of treatment.

So, at least for this particular machine in this particular study, the accuracy of the reporting data seems to be pretty good.

[andyomega]

well thats very interesting. they develop this stuff and we cant use it anymore.
I asked my provider about software to monitor my therapy while she was showing me my new machine and I swear she looked at me as if I suddenly had two heads. Then she told me my machine cannot do that. Of course she didn't even know my machine had an ultra fine filter either.

I cannot use software but I watched her get into the setup menu. She did it three times and attempted to explain to me how I can change the ramp time but its not functional with apap and all my settings were default. Clearly she had no idea what she was doing.
Anyway, I decided to buy an oximeter to see if half my problems are fixed.
The other half, well im looking into drugs for the mysterious awakenings.
Im trying Valerian root extract this week.

Thanks for explaining this stuff to me
-Andy

[Wulfman...]

well thats very interesting. they develop this stuff and we cant use it anymore.
I asked my provider about software to monitor my therapy while she was showing me my new machine and I swear she looked at me as if I suddenly had two heads. Then she told me my machine cannot do that. Of course she didn't even know my machine had an ultra fine filter either.

I cannot use software but I watched her get into the setup menu. She did it three times and attempted to explain to me how I can change the ramp time but its not functional with apap and all my settings were default. Clearly she had no idea what she was doing.
Anyway, I decided to buy an oximeter to see if half my problems are fixed.
The other half, well im looking into drugs for the mysterious awakenings.
Im trying Valerian root extract this week.

Thanks for explaining this stuff to me
-Andy

She told you that? Or is that what you believe?
It is functional in the M Series Auto.

Den