Am I missing something, or do I just have a crappy doctor?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
ATXFerret
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Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Fri Apr 18, 2014 6:41 pm

I have had sleep apnea for a very long time. 10 years, according to my wife. I have been officially diagnosed for the past 2 years or so. I have had a CPAP machine (after paying for 2 sleep studies), originally diagnosed to be at a pressure of 17, but always feel exhausted...and I do mean always. I'm 33 years old, and have zero energy. Every single thing I do is forced...there is no natural "flow" left, if that makes sense.

Well, my machine had always registered around 20 AHI. I finally got the money to go to a otolaryngologist/sleep doctor (he bills himself as both), and upon seeing my CPAP machine data and doing a MRI (or Xray, I don't remember) of my face, he decided to do deviated septum surgery. The scans he showed me certainly supported his theory that this is what I needed.

Well, after the recovery, the sleep apnea was not at all improved. So again, send him the data from my machine. This time he says I need... another sleep study.

So I do the sleep study, and the technician tells me (although he's not supposed to) that he believes the pressure needs to be at an 18. That's where he got the apneas to go away, he says. After a week or so of waiting for a call from the doctor, who is the one that's supposed to make the "official" call on my next step, I call his office. His nurse calls back later that day and suggests I set the machine to...16. One step lower. I can't really argue it without getting the technician in trouble, though, so I decide to defer to the doctor's judgment and go with it.

No change. Apneas are the same. Three weeks at 16 and I send the CPAP data to the doctor and call the doctor's office again.

He says I need a sleep study.

I tell them, no, I just had one of those less than a month ago. I can't afford to have monthly sleep studies, nor do I think there's any point in that. He has the data, right? In addition to the data from my CPAP machine? What would he get from yet another sleep study? Did he forget I already had one?

So their response is that I should borrow an AutoPAP from my DME, use that for a month, and send the data in. Poor man's sleep study, I guess?

I figure, once again, I'll defer to the doctor's judgment. This is different at least, right? Maybe I actually need an AutoPAP, and I'll actually get some SLEEP. At this point, I don't really care how I get it.

Well, I'm now three weeks in to my AutoPAP loan, and it wakes me up repeatedly every single night because it seems to be pegging the pressure at 20 constantly, which is causing leaks in the mask when I exhale because it's not a biPAP and therefore not really designed to handle this kind of pressure. That's my theory, anyway. The AutoPAP's readout says that its 90% pressure is 19-20 depending on the night.

I'm considering going to a different doctor, because I really think that he's either completely missing something, or so forgetful that he's not even checking the data on me that he already has. Whatever is wrong, this is obviously something that the sleep study should've picked up on...right? Or does all of this make sense, and my sleep-deprived brain just isn't piecing it together?

Unfortunately, our flexible spending account is already tapped out for 2014, so before I do sleep study #4 with yet another doctor, I will have to wait for next year. But any insight or advice would be extremely helpful. Thank you.

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Pugsy
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Re: Am I missing something, or do I just have a crappy doctor?

Post by Pugsy » Fri Apr 18, 2014 6:45 pm

What machine are you using now?...which APAP machine? Do you have the software so you can see for yourself what is going on?

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Julie
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Re: Am I missing something, or do I just have a crappy doctor?

Post by Julie » Fri Apr 18, 2014 6:47 pm

And what mask (type)? If you keep raising the pressure on a nasal mask if you sleep with an open mouth, losing all the therapy, it makes everything worse - accelerates the air going out instead of down... have you considered trying a full face mask to see how you do with it - if you are a mouth breather when asleep? The leaks in your graphs are high.
Last edited by Julie on Fri Apr 18, 2014 7:34 pm, edited 1 time in total.

ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Fri Apr 18, 2014 6:50 pm

It's a Phillip's System One RemStar Auto with A-Flex (560P). SleepyHead doesn't seem to be able to import from it.

jaye8898
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Re: Am I missing something, or do I just have a crappy doctor?

Post by jaye8898 » Fri Apr 18, 2014 6:52 pm

ATXFerret wrote:I have had sleep apnea for a very long time. 10 years, according to my wife. I have been officially diagnosed for the past 2 years or so. I have had a CPAP machine (after paying for 2 sleep studies), originally diagnosed to be at a pressure of 17, but always feel exhausted...and I do mean always. I'm 33 years old, and have zero energy. Every single thing I do is forced...there is no natural "flow" left, if that makes sense.

Well, my machine had always registered around 20 AHI. I finally got the money to go to a otolaryngologist/sleep doctor (he bills himself as both), and upon seeing my CPAP machine data and doing a MRI (or Xray, I don't remember) of my face, he decided to do deviated septum surgery. The scans he showed me certainly supported his theory that this is what I needed.

Well, after the recovery, the sleep apnea was not at all improved. So again, send him the data from my machine. This time he says I need... another sleep study.

So I do the sleep study, and the technician tells me (although he's not supposed to) that he believes the pressure needs to be at an 18. That's where he got the apneas to go away, he says. After a week or so of waiting for a call from the doctor, who is the one that's supposed to make the "official" call on my next step, I call his office. His nurse calls back later that day and suggests I set the machine to...16. One step lower. I can't really argue it without getting the technician in trouble, though, so I decide to defer to the doctor's judgment and go with it.

No change. Apneas are the same. Three weeks at 16 and I send the CPAP data to the doctor and call the doctor's office again.

He says I need a sleep study.

I tell them, no, I just had one of those less than a month ago. I can't afford to have monthly sleep studies, nor do I think there's any point in that. He has the data, right? In addition to the data from my CPAP machine? What would he get from yet another sleep study? Did he forget I already had one?

So their response is that I should borrow an AutoPAP from my DME, use that for a month, and send the data in. Poor man's sleep study, I guess?

I figure, once again, I'll defer to the doctor's judgment. This is different at least, right? Maybe I actually need an AutoPAP, and I'll actually get some SLEEP. At this point, I don't really care how I get it.

Well, I'm now three weeks in to my AutoPAP loan, and it wakes me up repeatedly every single night because it seems to be pegging the pressure at 20 constantly, which is causing leaks in the mask when I exhale because it's not a biPAP and therefore not really designed to handle this kind of pressure. That's my theory, anyway. The AutoPAP's readout says that its 90% pressure is 19-20 depending on the night.

I'm considering going to a different doctor, because I really think that he's either completely missing something, or so forgetful that he's not even checking the data on me that he already has. Whatever is wrong, this is obviously something that the sleep study should've picked up on...right? Or does all of this make sense, and my sleep-deprived brain just isn't piecing it together?

Unfortunately, our flexible spending account is already tapped out for 2014, so before I do sleep study #4 with yet another doctor, I will have to wait for next year. But any insight or advice would be extremely helpful. Thank you.

You had the sleep studies, paid for them, and the records are legally yours. Get copies of all your results and see a competent sleep specialist. Good luck!

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ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Fri Apr 18, 2014 6:59 pm

I got the patch for that APAP and can see the data on SleepyHead now.
You had the sleep studies, paid for them, and the records are legally yours. Get copies of all your results and see a competent sleep specialist. Good luck!
So I take it your opinion is that the doctor isn't competent, and that I'm correct in being suspicious at this point?

ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Fri Apr 18, 2014 7:02 pm

Image

Keep in mind that the AHI listed here is probably understating the matter considering the machine is waking me up every time I get into deep REM, which is where most of my apneas usually are.


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Re: Am I missing something, or do I just have a crappy doctor?

Post by zoocrewphoto » Fri Apr 18, 2014 7:17 pm

Your apap is set wide open, which causes a ton of events to happen while it gets up high enough to do anything useful. You need to set the minimum pressure much higher than that. My guess would be at least 12. It might need to be at a min 16. If it solves most things, then a few peaks up to 20 my not be a big deal.

I suspect your doctor only knows about diagnosis and not so much about actual treatment.

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Pugsy
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Re: Am I missing something, or do I just have a crappy doctor?

Post by Pugsy » Fri Apr 18, 2014 7:26 pm

Go to Preferences/Appearance tab and remove the check mark for "use Pixmap caching" and let's see if the pressure line straightens up. It's not showing properly and looks odd.

Why has no one suggested that you try a bilevel pressure machine? Has it ever been discussed?

You are going to need those higher pressures and a bilevel is so much easier to manage both in comfort and even with leaks.
The bulk of your AHI is obstructive in nature...those OAs and Hyponeas. You need more minimum pressure and likely more maximum pressure available and to get that you need the available 25 cm with bilevel machines.

Oh...did I miss it? Which mask are you using? But your leaks aren't horrible. Large leak territory is going to likely be up around at least 80 to 90 L/min and while you got close...you didn't make it there so while the leaks are likely annoying and waking you up...I don't see then being a huge factor in loss of therapy pressure.

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Last edited by Pugsy on Fri Apr 18, 2014 10:51 pm, edited 2 times in total.
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Re: Am I missing something, or do I just have a crappy doctor?

Post by library lady » Fri Apr 18, 2014 7:28 pm

Get your records and find a different doctor, preferably a sleep specialist.

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Re: Am I missing something, or do I just have a crappy doctor?

Post by JDS74 » Fri Apr 18, 2014 7:40 pm

First things first.
1) Please post your equipment using the User Control Panel. I have a link on how to do that down in the signature block.
2) Get copies of all your sleep studies. If there seems to be a problem, make the request in writing.
3) Can you post SleepyHead results that show the pressures and the breakdown of the AHI? That will help in seeing what the problem actually is. I think the report needed is the daily view and not the summary statistics that you already posted.

At this point, it seems that the level of trust with your sleep doctor has dropped too low.
If you go to a new one, make sure you take all of you sleep studies and your machine data. Be prepared to explain that your financial circumstances preclude another sleep study right now and you need to be able to move forward with the existing data.

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musculus
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Re: Am I missing something, or do I just have a crappy doctor?

Post by musculus » Fri Apr 18, 2014 7:55 pm

OMG! Like zoocrew said, you have to set min pressure pretty high, maybe 16 cm to say the least. I would say start from 12 cm and increase 0.5 cm everyday till your apnea/hypopnea is fairly controlled.

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Last edited by musculus on Fri Apr 18, 2014 8:04 pm, edited 1 time in total.

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Re: Am I missing something, or do I just have a crappy doctor?

Post by musculus » Fri Apr 18, 2014 7:58 pm

I don't see much value of seeing another doctor or additional sleep study. It seems you don't have CSA (those few are induced by CPAP) at all, You already have the APAP for OSA and you need right now is to optimize the APAP treatment.

Also, frankly you need a biPAP with such high pressures.

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Re: Am I missing something, or do I just have a crappy doctor?

Post by Julie » Fri Apr 18, 2014 8:54 pm

But would he really need the high pressures if in fact they're caused by high leakage made worse by (vicious cycle) higher pressures - pushing Pap air out of his mouth instead of down his airway?