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Question about sleepyhead / Issues with diagnosis
08-07-2013, 04:45 PM
I just sent 5 more pages
08-07-2013, 05:10 PM
Those were large PDF files.... can't upload them to the forum, so I put them temporarily in a folder on our server. There were only 4 files... the 2nd one is the same as the 5th one.
They will be removed in 7 days.
Here's the link to the folder for those who can help Ayealp1:
Apnea Board Administrator
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-07-2013, 06:47 PM
Thank you so much for all of your help!
08-08-2013, 01:38 PM
I want to thank anyone in advance for any input you may have. I'm posting a link to my husband's sleep study. He was told by the RT at his CPAP fitting that he has Central apnea, but the diagnosis code is for Obstructive apnea. If you look at the actual charts on the study, you will see that he only had ONE obstructive apnea that night, and numerous CSA events scattered before and after the CPAP was applied.
I have learned from the manufacturer that his machine is NOT used for patients with CSA, only OSA.
The Dr. refuses to return my calls, and his office is very rude (even hanging up on me!) when we call for an explanation. I have made an appointment with a different Pulmonologist next Wed. for a second opinion.
What do you see? Am I missing something? If he only had 1 OSA all night, why did they diagnose him with OSA? I am thinking whomever read the study, read it wrong. Am I missing something?
Thank you for any help or advice ....
08-08-2013, 02:27 PM
I'm looking at the 3rd PDF from the link: http://www.apneaboard.com/delete/slp00%2...29%203.pdf
To my untrained eye, something looks fishy there. His diagnostic sleep study showed an AHI of 26.8 events per hour measured over a period of 130 minutes (~2.17 hours). According to the report they break down as:
6.9 apneas / hour
19.8 hypopneas / hour
13 of the total apneas were central
So just looking at those numbers, his central apnea index (CAI) is about 6 (calculated as 13 divided by 2.17 hours).
So his total obstructive apnea index must have been 6.9 - 6 = 0.9, or about 1.
Being that this was the diagnostic part of his split night study which did not involve CPAP, that means the man has complex sleep apnea with a dominant central sleep apnea component. He demonstrated 6 central events and 1 obstructive event for each hour of the study.
Now the part that fascinates me is that his CPAP study has all zeros. No apneas, hypopneas, nothing. Even the centrals are gone.
That's just a little too good to be true, in my opinion, though I could be dead wrong.
Do you think there's a chance that they maybe 'tailored' this sleep study to what your insurance would cover, knowing that maybe a Bi-Level or ASV machine would be out of the question? I don't know what else to suggest, but certainly I'm watching your story with interest. I'm very curious to know what the new doctor says about it.
By the way, assuming that the report is wrong and his treated AHI is not actually 0.0, the CPAP is still helping him in the meantime. It can control the obstructive apneas and the hypopneas, which could theoretically bring his AHI down from 26.8 to just 6. There's definitely a benefit there not to be overlooked. I think the CPAP will help to keep him out of hypoxia and he should be using it not matter what. The clinic may have decided that treating those was the higher priority (and they're right, I believe). Their position could be that the central apneas he's having are not severe enough to worry about. If that's the case they need to explain that to you, and why.
I'm hesitant to believe the perfect 0's across the board at 8 cmH2O when centrals were present during the diagnostic, but I haven't seen enough sleep studies to know for sure that that isn't possible.
Another question to ask is whether there's something else causing his centrals to appear in the report. It mentions he has Restless Leg syndrome. Does that maybe cause him to hold his breath for some amount of time as he's moving around? Is it possible that some things that show up as "centrals" are not really that and could be fixed with CPAP?
08-08-2013, 05:51 PM
If you look at the last page I posted, he showed 0 at 8% .... but he was only on 8% for 6 minutes.
He has a genetic disease called Hemochromatosis, Im going to do some research to see if there's a connection there.
Our insurance is very good -- they cover all supplies 100%, and have never turned us down on anything.
Thank you for taking a look-- it's so frustrating when the medical professionals won't. I think someone dropped the ball here. When I asked the office manager at the sleep study clinic for the name of the Dr who read the study, she told me that they couldn't release that info. I will graduate school in 1 year as a Registered Nurse, and I know that is against patient rights. Every patient has the right to know who the Dr is that is treating their illness. When I told her this, and pushed further, she hung up on me.
Something is wrong here.
Yeah, you're right... they only recorded 6 minutes of data at the prescribed pressure. That would explain the perfect zeros for events; maybe it wasn't enough time to capture any. So really we can't tell if his central apneas are happening or not with the CPAP at that pressure. Strange that they would end the titration like that and call it a day. I thought the protocol was that they reach a certain pressure where events seem controlled, and then back off a little until they start coming back. Then they adjust upward until they find the minimum pressure that works. Something like that, at least.
I don't know if his machine is data-capable or not, but were you able to look at his nightly data in SleepyHead? It'll be a tough call because as I said earlier some amount of central events appear in a lot of peoples' data who don't really have central sleep apnea. That's really where the doctor needs to come in because we can't tell you if they're worrisome or not. All we can say is that if they are real and need to be treated, then you'll need that Bi-Level/ASV machine.
I took the liberty of rotating one of the pages of his report to make it easy to read. This one shows that his SpO2 % is pretty consistent around mid-90's and the signal gets a little more calm when the CPAP is on. Also, his heart rate comes down a bit. Before CPAP his sleep is very fragmented and he has a lot of arousals, but half way through the titration that settles down. He goes into REM a couple times and then falls into a deep sleep except for an event that wakes him up shortly before the pressure goes to 8 (see the dip in heart rate). Maybe giving it a go with a decent data-capable CPAP or AutoCPAP for a couple weeks would be good to arm yourself with some more data for the new sleep doc.
It's ridiculous that they won't talk to you or even tell you who the doctor is. I used insurance for my sleep study and the doctor's name is listed there in the claim (actually two claims, one for the lab and one for the doctor's interpretation). Maybe you can find out that way?
08-09-2013, 08:58 AM
His machine isn't data capable.
I did find out the Dr's name, it made me angry that they refused because I know how wrong it is. I called his office to request he re-read this report. they told me the Dr. stands by his diagnosis. He won't talk to me. Why won't he explain to me if he is so sure? His office staff told me "he will be happy to talk to your primary Dr" .... why not me? Why wont he explain it to me so that I understand? It's silly.
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