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Newly "diagnosed" but doubting diagnosis?
#1
Hi everyone!

I am not sure how to ask these questions but by nature I am blunt, so that's the direction I am going to go. I generally trust the public, people who have been / are in the same situation as I am in. I was required to get a sleep study by a DOT physician due to BMI and neck size (no other qualifying factors). My wife, ENT and physician all tell me that I don't or most likely don't have sleep apnea. I did a 2 night home study with a ResMed device. After dropping off the device the tech downloaded the data, verified there was enough info and then emailed me a couple hours later with the initial report off the device. The ApneaLink report confirmed three apnea events on day one and zero on day two. There were 109 hypopnea events over the 2 days ( 9 sleep hours ). Here is where I am confused. The tech that emailed me the data report says that the information she sent will not be accurate and the doctor will review and "adjust". Uh, ok? I received a phone call from the doc this evening where after review of the reports he received I was having 17 apnea events per hour. The report I received gave the following for day one:

AHI 10.5
HyPop Index 9.9
Apnea Index 0.6
Average Sat 92
Number of Desats 69
Obstructive Apneas 1
Central Apneas 2

I am a diagnostician in a complicated field but not in the medical field. To me data is data. Hard data to me is rarely incorrect but when it is it's normally a catastrophic failure. I was told by the doctor that the data report sent to me from the ResMed device software was incorrect and I shouldn't pay any attention to it. Another uh, ok? I asked for copies of the data he was reviewing (was told it was completely different) and used to form my diagnosis and was denied. Yet again, uh, ok?

Without divulging my complete medical history, I smoke and am a tad overweight. Other than than ALL of my vitals (BP, Cholesterol, Sugar, etc) are all well within normal ranges without medications.

After speaking with my ENT, I was informed that he has medical "reasons" that would explain parts of the hypopneas.

With all of this being said here are my questions:

Am I out of my mind for questioning his diagnosis?
How could the initial data report off the device be incorrect?
How does a doctor "review and adjust" the data?


I understand the data he is reviewing is more in depth and to be interpreted by a trained professional which I am not. The answers I received coupled with other conversations / interactions with this office has me uneasy, doubtful and no more the informed. Don't get me wrong, I would like to believe I am not in denial and I do take my health very seriously. If it's a problem I fix it. Thank you in advance!





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#2
Hi KingTitus -- First, you are entitled by law to your medical records, so there is no justification for the doc denying you. Request (in writing) all medical records pertaining to this test and any prescription resulting from the test and the diagnosis.

As for the data, I suspect it is accurate enough. Even the way the tech emailed the earlier results, with the 109 hypopneas over 9 sleep hours, that right there gives you the diagnosis of sleep apnea.

The diagnosis of sleep apnea is based on the AHI, the hourly index (average) of apnea and hypopnea events per hour. An AHI > 5 means a diagnosis of sleep apnea. The "H" in AHI is hypopneas ("partial" airway collapse). In your case, your sleep apnea consists mainly of hypopneas. But they count. They got you the diagnosis.

You don't sound out of your mind Wink or in denial even. You got some weird messages from the tech about the 'inaccuracies' in the data, etc. It would be hard to make a lot of sense of what they were trying to communicate!

And home tests are not always correct. But from what I understand, the erroneous tests are usually false negatives and not false positives.

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#3
Hi KingTitus,
WELCOME! to the forum.!
Much success to you with getting your sleep reports figured out and hang in there for more answers to your questions.
trish6hundred
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#4
(12-17-2015, 12:58 AM)KingTitus Wrote: . I was required to get a sleep study by a DOT physician

You should be thanking them. Life is about to get a lot more pleasant and awake.

Also, your wife should thank them because you'll last longer. 8-)

It's not a bad thing. I wish I discovered mine when I was 25 instead of 55.


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#5
I think the tech might have been hedging - he was simply looking at the number of obstructives. By that, you're fine.

But you're not.

The hypopneas tell a different story. While they are defined as abnormally slow or shallow breathing" they are events that count as a sleep disturbance, and while they might not be full on apnea events right now... odds are they will be, at some point. Your sleep doctor is better able to read the data, and *his* definition of sleep apnea is probably more correct.

So the question now is, what to do about it. Is it serious enough to require treatment... and even if not, is it serious enough that your job will require you to treat it. You mentioned the DoT - if there is driving involved, the odds are that they are going to want you to treat it.

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#6
Ahi of 17 with desats equaled a heart attack in my case..
Get the machine, thank your stars docs are finally waking up and testing for it, and your getting treated before much worse happens.
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#7
My apologies to all that have replied, I have been crazy busy over the holidays. Here is the update since I wrote the original post. I am going to perform another sleep study. The original center is refusing to give me or anyone else the results, reports or data from the device including my ENT. I have had to resort to filing a complaint with the AASM and the medical board. This one will be at a facility instead of a take home. This has been an absolute nightmarish event to say the least.

Thank you to all that have replied. I will update with the new results soon.

Have a great new year!
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#8
(12-27-2015, 02:35 PM)KingTitus Wrote: The original center is refusing to give me or anyone else the results, reports or data from the device including my ENT. I have had to resort to filing a complaint with the AASM and the medical board.

Good going.

Perhaps the doctor was able to tell from the data that part of the time you were awake and properly subtracted the awake time. That could explain a higher "adjusted" AHI. And perhaps the doctor miscommunicated and meant AHI events rather than apnea events. But the refusal to share the data casts doubt.

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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#9
They have to give you the test results. Thats the law. They know that. They just assume you dont
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#10
I had mainly hypopneas an I will tell you that it is much better on the machine, at least for me.
The tech cannot diagnose, the doctor has to do that. I would not have trusted either of the tech's that did my studies to tie my shoes. zombies.
Take a look at the plots from sleephead, nothing is clear cut. You hold you thumb up and say "ya that's a central". some are easy some are not so much. Personally mine are mainly messed up

Am I out of my mind for questioning his diagnosis? NEVER, question and own you health. You care about it more than any one ever will.
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