My Doc Says: "Ignore the Numbers."

[Guest]

Went to a sleep specialist at Kaiser. My concern was that my AHI scores were consistently higher than my original sleep study. I brought two weeks worth of data downloads with me to discuss. He wouldn't even look at them and told me that the numbers from my APAP were basically worthless.

This goes against everything I have read on these boards, but he claims to be a sleep apnea expert. I'm so confused!

[samofny]

He probably believes that the only accurate and worthy numbers are those measured by a sleep clinic. I have to agree with him, that the APAP data could be used as guidance or to alert you to problems, but a sleep clinic is the only way to get an accurate assessment.

[Slinky]

The key word is he 'CLAIMED" to be a sleep expert. Obviously his ego gets in the way of his intelligence and expertise. Or maybe he has little of either. If you have the option, ditch him and get another sleep specialist. Altho I suppose w/what I've read about Kaiser you probably don't have that option. My condolences.

[mindy]

Hi,

My sleep doc said that how the APAP machine counts OAs vs hypopneas may not be as accurate as the sleep center data.

In addition, the sleep tech tested my mask at a high pressure and came up with a leak of around 40 which is considered "acceptable" - i.e. the machine is able to compensate for it.

Finally, I'm under the impression that it doesn't really make much difference if you have an AHI of 1, 2,3 or 4 ... as long as it's below 5. The difference between 2.5 and 4.5 may be splitting hairs.

I'm sure there are people who disagree and I certainly don't feel I have enough knowledge to say who's right!

Mindy

[Wulfman]

Went to a sleep specialist at Kaiser. My concern was that my AHI scores were consistently higher than my original sleep study. I brought two weeks worth of data downloads with me to discuss. He wouldn't even look at them and told me that the numbers from my APAP were basically worthless.

This goes against everything I have read on these boards, but he claims to be a sleep apnea expert. I'm so confused!

I can relate. My sleep doctor questioned the fact that I was doing extremely well on a pressure of 10 cm when he had prescribed 18 cm. (and I changed my pressure after less than an hour at 18 cm without his knowledge or approval). I fired mine after about the 3rd visit and his less-than-positive attitude. I had the software from the get-go, so I felt comfortable monitoring my own therapy without anybody else's help.

I could say I'm a "sleep expert", too......been sleeping most every night for the last 59 1/2 years....

They just want a steady stream of income....it's ALL about MONEY.

Qualifier: I don't have Central Sleep Apnea, Mixed, GERD or some of the other complications others do.....just plain old OSA and my therapy has been pretty "straight forward". So, the mileage may vary in what medical attention some may need.


Den

[Treesap]

Did he say what they numbers were good for and why they are even available to read on the machine? Surely it tells you something or they would not be there. Sheesh.... I've had Kaiser insurance before. You have my condolences as well.

The key thing is: How do you feel? It sure seems odd that they would rely only on a sleep study to see how your treatment is working. That is the expensive route to go. That's not like Kaiser.

[Weezer]

Thanks for your input.

I agree that the APAP numbers are not going to be as accurate as a sleep study – especially if it has a high sensitivity to HIs as I believe my Autoset Vantage does.

But I'm not feeling much better after a month – though I haven't yet been able to sleep all night, every night with CPAP.

Those numbers must mean something, like you say. And if my AHI numbers are much higher than my sleep study, how do I know that CPAP therapy is working?

Plus, the question remains: do I have straight-up OSA, or am I having centrals or mixed apneas? Would this show up on a split sleep study? Is this something to be concerned about or should I just stick with what I'm doing?

And yes, Kaiser sucks. The doctors have little time to spend with their patients and less patience to explain anything to them. They also need to work on their bedside manner...

[Wulfman]

It's a fact that a full blown sleep study would probably be better.....if done in your own home where you CAN sleep.

But, the rhetorical questions one could ask their nay-saying doctor could be:
If the detection/reporting technology that's been built into these systems is so flawed......WHY did the manufacturers put them in there and how did the FDA allow them to be in there?

True story....actual conversation: At the time that I showed my reports to my doctor and he disputed them, my AHI was less than 2.0 and more like 1.5....so I asked him.... "Doc, isn't anything below 5.0 considered normal?".....he replied "Yes, but YOU'RE NOT NORMAL!"......I replied "Maybe not, but those AHI numbers could be off by 200 - 300% and I'd STILL be under the 5.0 mark." THAT shut him up.

Den

[mindy]

True story....actual conversation: At the time that I showed my reports to my doctor and he disputed them, my AHI was less than 2.0 and more like 1.5....so I asked him.... "Doc, isn't anything below 5.0 considered normal?".....he replied "Yes, but YOU'RE NOT NORMAL!"......I replied "Maybe not, but those AHI numbers could be off by 200 - 300% and I'd STILL be under the 5.0 mark." THAT shut him up.

Den

Den,

That's priceless - good for you!!

Mindy

[Wulfman]

Weezer,

Are you SURE you're not mouth-leaking or mouth-breathing?....or that your APAP pressures are sufficient? If you can get a copy of your sleep study, that should tell you about Centrals, etc.

Den

[Slinky]

Thanks for your input.

I agree that the APAP numbers are not going to be as accurate as a sleep study – especially if it has a high sensitivity to HIs as I believe my Autoset Vantage does.

But I'm not feeling much better after a month – though I haven't yet been able to sleep all night, every night with CPAP.

Those numbers must mean something, like you say. And if my AHI numbers are much higher than my sleep study, how do I know that CPAP therapy is working?

Plus, the question remains: do I have straight-up OSA, or am I having centrals or mixed apneas? Would this show up on a split sleep study? Is this something to be concerned about or should I just stick with what I'm doing?

And yes, Kaiser sucks. The doctors have little time to spend with their patients and less patience to explain anything to them. They also need to work on their bedside manner...

Well, Weezer, since you appear to be stuck w/this sleep "doctor" ....

I'd ask for a copy of the full summary data of that split-night study (about 5-6 pages, w/graphs) as well as the dictated results report (about 1-2 pages). They are part of your medical records and you have a LEGAL RIGHT to copies of your medical records. Cite HIPAA if necessary.

That should help answer some of your questions and give you some data to work with to decide which way to go now.

What leak rate is showing up in your data downloads? What pressure or pressure range is your xPAP set at? How are you getting along w/your mask? The mask "could" be the key to your not feeling rested yet. I assume we are correct in assuming that your current AHI is higher than the AHI during your split night study that was high enough to qualify you for xPAP? Or is it just higher than what they acheived after introducing the xPAP and mask?

How long are you taking falling to sleep w/your xPAP? How often do you wake up and turn your xPAP off and then turn it back on and try to go back to sleep? What is the Settling time on your machine set at?

Are you running your Resmed S8 AutoSet Vantage in auto mode or in straight CPAP mode?

And HOW ON EARTH did you get Kaiser to kick loose w/an autoPAP or did you self-purchase it? THAT could have an effect on that sleep "doctor"'s attitude as well. Working for Kaiser he may well not even have any idea of how a Resmed auto works!!!!

[ozij]

Hi,

My sleep doc said that how the APAP machine counts OAs vs hypopneas may not be as accurate as the sleep center data.

Questions:
How far is it from sleep study accuracy?
How accurate is a study based on a single night in strange conditions (not that accurate according to this study) Mild to Moderate Sleep Respiratory Events* One Negative Night May Not Be Enough


In addition, the sleep tech tested my mask at a high pressure and came up with a leak of around 40 which is considered "acceptable" - i.e. the machine is able to compensate for it.

Finally, I'm under the impression that it doesn't really make much difference if you have an AHI of 1, 2,3 or 4 ... as long as it's below 5. The difference between 2.5 and 4.5 may be splitting hairs.

That is very individual - I can feel the difference at 3 and above. Maybe that's my machine "being inaccurate" - but that's the way it is.

Some doctors and clinics use automatic machines for finding out a recommended pressure - and research has shown that this kind of titration is good e.g Response to a 2 week continuous positive airway pressure trial accurately identified patients with obstructive sleep apnoea syndrome

and : Accuracy of an Unattended Home CPAP Titration in the Treatment of Obstructive Sleep Apnea : ... These results indicate that auto-CPAP therapy represents a new useful and accurate way to identify conventional CPAP setting outside hospital and sleep laboratories.


So... maybe the doctor needs some refreshing


O.

[GumbyCT]

He wouldn't even look at them and told me that the numbers from my APAP were basically worthless.

The questions to ask him were - Why do you say that? Doc what makes you feel that way? Does he know something we don't? Pump him.

They just want a steady stream of income....it's ALL about MONEY.

Isn't that true in life? The love of money is the root of all evil.

Unfortunately, business decisions are made all day, every day, not on logic, common sense, instinct, or love but for someones desire to maximize profits.
GumbyCT

[mindy]

Thanks, Ozij ... interesting info!

Mindy

[sleepyWI]

Perhaps he's not up on the literature about alternatives to in-lab PSG.....


http://ajrccm.atsjournals.org/cgi/content/full/162/1/94

http://archfami.ama-assn.org/cgi/reprint/9/2/168.pdf

http://www.sciencedirect.com/science?_o ... 596397f9b1