How do we know that a OSA Dx isn't a scam?

[larry63]

Just a thought and a suspicion. This whole sleep study -> DME thing reminds me too much of the chronic Lyme disease controversy.

How do we know that we are not just being had?

I do realize that many (if not the majority) or people on this forum report feeling better on xPAP therapy, so it does seem that that there are genuine cases of sleep apnea that get better with xPAP treatment. So I'm not saying that this condition doesn't exist.

I am just wondering if there are business interests involved that are leading to overdiagnosis.

Why is it, for example, that, knowing that I am a loud snorer, I have asked many people that I slept next to (or in the same or adjacent room) if they heard that I ever seemed to stop snoring and/or started gasping for air, and without fail, they all said that either 1) I wasn't snoring at all, or 2) I was snoring loudly but evenly and steadily without any pauses.

In addition, I had rigged up a Pure Data patch to recored my snoring, and used it twice on two nights. I only heard constant, steady snoring.

So why did my sleep study show an AHI of 65? Doesn't that mean that on the average, I have trouble breathing for more than 10 seconds every frigging minute?!?

I suppose I am just asking for re-assurance. No, scratch that - I'm asking for some real data points. If I felt better after starting CPAP 6 weeks ago, perhaps I wouldn't be writing this, and I would be a believer. But as it is, I feel grumpy and suspicious. I really miss having dreams. At least I used to only wake up once or twice during the night to chug water and go to the bathroom, but now I don't remember any dreams, only the many times I wake adjusting my mask during the night. I just feel very sleep deprived lately.

All of this is just very eerily similar to the chronic Lyme controversy - I went through that myself - diagnosed based on two negative tests and one equivical one. Insurance company gets billed for 8 weeks of IV therapy for several thousand dollars. And after a year of IV and oral Abx, I never really ended up feeling any better. Kind of makes you wonder what the business liason is there, doesn't it?

I realize (and am sorry) that this post is probably grumpy sounding. But I'm just very tired from this "therapy", and legitimately I think, very suspicious of the business interests of the medical professionals involved. It seems that suddenly, OSA is the "in" diagnosis now. Like chronic Lyme was back in the early 90's.

Any thoughts?

[Goofproof]

Because I don't fall asleep at the wheel of my vehicle after 30 minutes. Jim

[Muse-Inc]

......sleep study show an AHI of 65? Doesn't that mean that on the average, I have trouble breathing for more than 10 seconds every frigging minute?!?...If I felt better after starting CPAP 6 weeks ago, perhaps I wouldn't be writing this, and I would be a believer. But as it is, I feel grumpy and suspicious. I really miss having dreams. At least I used to only wake up once or twice during the night to chug water and go to the bathroom, but now I don't remember any dreams, only the many times I wake adjusting my mask during the night. I just feel very sleep deprived lately...

Sounds like severe OSA to me with its attendant symptoms. As to the not feeling better, sounds like something is not working right with your therapy. Do you have software to read your nightly data? What are your leaks like?

[Goofproof]

Maybe with a Nasal Mask, your treatment is going out your mouth, without a machine and software you won't be able to tell if your XPAP is helping you. Jim

[kempo]

I am one of the lucky ones who got immediate energy from using a cpap. Some take longer. Sometimes months. Sometimes a change in mask types or pressure. Don't give up after just 6 weeks . Have and keep a positive attitude. Hang in there. It will get better.

[GumbyCT]

It is certainly a money mill no doubt. And if you don't have a data capable machine and the software to check how you are doing you are likely being scammed.

I think you would need to understand how the scoring is done to fully understand the AHI you mentioned and how it affects you.

[snuginarug]

This is an interesting question. There do seem to be a number of DMEs that are not totally scrupulous. And we all know there are crooked doctors running insurance scams. However, each one of us has a night's worth of concrete data permanently recorded and stored at the sleep lab. It's not like Lyme's where it is diagnosis by elimination. There is an active, concrete collection of positive data. Not just a bunch of negative test results. And ultimately, we can't know FOR SURE unless we personally get certified in the appropriate course of training and look over the night's worth of raw data ourselves. Barring that, we have to trust the AMA licensing board, IMHO.

Getting educated, learning what your sleep study report means, and getting a data capable machine... these are things, as GumbyCT has pointed out, that can help. But there is always the possibility that your doctor is lying through his teeth and falsifying data. It can happen, and I am sure it does, on very rare occasions.

[larry63]

Hey Muse and goof,

No I don't have any software for the machine - only the LCD display. Even if I did shell out for the SW (which from what I understand, they only sell to clinicians), I would need to get the card reader hardware, and also I presume that the software doesn't run on Linux... well I digress, probably it would work with Wine (does anyone know if it will run under Wine?)

Three of us, one other forum member here, I, and someone on apneasupport.org, all have the situation where our F/P 244 reports insane leakage rates like 50 to 60 LPM. Even when when we don't wear the mask and seal everything off, it reports 35 LPM! So we have no way of knowing if we're leaking, because what the F/P CPAP pump reports is obviously completely wrong!

In any event, the next step for me is to try to get an rx for a chin strap. I 'm not sure who to go to for that - I suppose it would be the ENT doc that initially referred me for the sleep study.

Anyhow, sorry again for the grumpiness. But I do not apologize at all for my doubts. At least where I live, in USA, the medical industry is a business. I see it all the time where my primary doctor will prescribe the newest drug (with the highest copay) that the reps are pushing on him. I really have no way of knowing if I really have sleep apnea at all.

However, obviously, I will try the chin strap. It would really be a miracle if there was actually something that I could do to help my concentration and focus.
I know I did in fact relax my mouth a little bit too much last night, because I suddenly awoke because my lips were fluttering a little. But that's so far the only night that this has happened. But it's definitely possible that there may be other times where I am actually leaking a bit from my lips but silently so that it doesn't wake me up. I'm having trouble buying into that, but maybe I'm getting deeper sleep now so that the things that I assume would immediately wake me up, in fact might not do so any more.

So I guess my strategy is 1) get a chin strap, and 2) try to figure out why my CPAP registers a 35 LPM leakage even when everything is completely sealed off.
(#2 will be pretty much impossible, since I'm not a clinician and I because of that, I assume that I won't be able to contact them)

L

[Goofproof]

Chinstraps are a scam, for most people. Jim

Collection of data so you can get your treatment is most important, when you control your own treatment, you are harder to scam. I'm Scam proof, and Goofproof!!! Jim

[kteague]

It is good to be vigilant so as to not be erroneously labeled with the latest and greatest scapegoat diagnosis. A healthy dose of skepticism is good as long as suspicion doesn't cause one to delay or refuse needed treatment. Sounds like your doubt is healthy - you are using the prescribed treatment.

I personally would believe the data from a sleep study before I'd count on an occasional observer getting it right. Just because you didn't obviously stop breathing in their presence doesn't mean you never do. Many of us have better periods during the night, or even better nights, where appearances could be deceiving. Also, hypopneas are included in that AHI and cannot be so readily identified as an apnea might. Even so, they can cause oxygen desats and fractured sleep. Oh, by the way, there are even non snorers who have sleep apnea - probably takes them a real long time to be sent for a sleep study.

I didn't have to wonder if they got it right on me - I had classic textbook symptoms. Hey, it's alright to be grumpy. Get things stabilized with your treatment and I'm guessing you'll be much less grumpy. Besides a chin strap, some on here tape their mouth shut. Others prefer to go to a full face mask. Personal preference.

[jonquiljo]

Why is it, for example, that, knowing that I am a loud snorer, I have asked many people that I slept next to (or in the same or adjacent room) if they heard that I ever seemed to stop snoring and/or started gasping for air, and without fail, they all said that either 1) I wasn't snoring at all, or 2) I was snoring loudly but evenly and steadily without any pauses.

You make some good points and yes, I would always be concerned that we are being "had". Physicians like to make fast diagnoses - and they have to make a diagnosis or they usually do not get paid (our wonderful medical system)

BUT...

You have the same symptoms as I do. I snore and snore and snore and no one has ever noticed me gasping for air. I had my whole lower palate lasered out about 15 years ago - and it didn't change a thing. They apparently forgot to look into my nose because back then sleep Dr's and ENT's were obsessed with the lower palate. Basically I snore and my nasal passages are tight. So I can't breathe enough out of my nose to sleep normally and it ends up waking me, though I am not conscious of it. But no one could figure this out - much less classify it.

I started CPAP in 1997 and could not use the machine as it was a pain in the butt and did not confirm to me that it was helping. Back then I had a full sleep study but all they could figure out was that I snored a lot and that CPAP might help. It might have helped if I had a Dr that paid attention too. So I stopped using the machine after off and on usage for a couple of months. Fast forward to 2010 - I am tired of being tired. I get a take home machine sleep monitor (I didn't want to go to a sleep center - I can never sleep when I am watched). I am diagnosed with "moderate apnea" with AHI of 13.6. Most of what happened while wearing the device were hypopneas. It's not really apnea - or is it? So I buy a machine because I am tired of being tired. A week later I feel a lot less tired. Now, three weeks later I feel great!

I think it's wrong for them to lump all these disorders into a single classification - OSA. But that's the way medicine works - we have not evolved very much yet. But using a machine really helps - even though my apneas are rare. It clearly helps me sleep better - and that's all that matters.

[Bons]

Larry: "So why did my sleep study show an AHI of 65? Doesn't that mean that on the average, I have trouble breathing for more than 10 seconds every frigging minute?!?"

Did you ask your doctor how many of the apneas are OSA and how many are centrals? Is it possible that you'd be better off on a bipap or ASV? More expensive machines again, to make you worry about being scammed, but perhaps necessary in your case. That's where I'm headed. My titration study showed that my obstructives were eliminated but my centrals went up a bit. My AHI is still high, so the doctor is guessing that the centrals have increased since I went on the CPAP (I don't have access to data, but since this machine is going bye bye I'm glad I didn't purchase the software). I trust my doctor because he's a part-time prof at Penn State teaching sleep disturbances and pulmonary neurology. Does your clinic website provide bios of the doctors so that you can see what education, fellowships or positions they've had?

[BlackSpinner]

You don't need an rx for a chin strap - an ace bandage will do the job but it might not keep your lips closed.

You are a linux buff - how come you are willing to run without data or knowing what is going on? would you treat your latest tech toy that way? - I bet you know the ins and out of the computer you work on. Your life depends on this new toy - your intellectual life as well as your physical life - no O2 means less mental ability - and damage to organs like the heart.

card readers and software can be bought (or found somewhere cough cough) - you know that. Take control of your life and your health. Get copies of your sleep study and your rx. Shop around for a mask that fits and works best. Your life depends on - spend more time on than you spend buying new running shoes.

[ozij]

The difference in how we feel
The difference in the machines that measure the pressure's effects.
The machine can be data capable CPAP, or pulse oxymeters.

Get the gadgets whose measurements will prove to you that you have no problem.

If they show you do, you will have to put your mind to optimizing your therapy. CPAP can by very annoying in the beginning, but conviction that you really need it helps in solving the problems it causes.

[lbw]

My sleep study showed no REM cycles without CPAP. In the last 4 months I have started dreaming again. As well as my depression has improved, no need to take sleeping pills anymore. Overall just feel better. Used to be a really restless sleeper. Waking up frequesntly. Now barely move when I sleep. Diagnosed 4 month ago and haven't missed a night since.