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[Treatment] Incompetent ENT? Or sleep clinic? Both?
#1
Incompetent ENT? Or sleep clinic? Both?
Hello all,

Have been treated for OSA since October 2015. ResMed AirCurve 10 VAuto in BiPAP mode, pressure 11-15.  

My AHI never got to a clinically treated level -- usually stayed between 6-12 on a given night. Had multiple titration studies. My ENT told me about a year and a half ago: huh, yeah, it'll get better if you lose a little weight.

Last fall, as I started losing weight, my AHI started going up. I started looking at the SD card data in Sleepyhead and noticed I was having increasing Central events -- and the number was getting higher than my obstructive number.

Messaged my ENT this January, was very clear about what was going on, six weeks later finally had another titration study. I tell the nurse who monitoring me when she asked why I was having another study that I was having increasing CSA events. They tell my doctor after the results come back to have me up the pressure to 14-18. 

My central apnea events started sorting through the roof. One night I had close to 20 events per hour, although it tended to be more like 5-6 central events per hour.

I messaged my ENT again and was like, dude, what the heck, this is not right. He refers me to a specialist for central apnea. I had an appointment last Thursday. The new doctor takes one look at the SD card data and was like, you're being overventilated, this is ridiculous. Said it was almost certain changing the settings would get rid of the CSA. (And if not, then they'd need to figure out what was wrong with me.) Sets my machine up for APAP mode, 4-16. My AHI has been below 4 every night since. I have taken a nap twice in the last couple of days -- AHI of 1 each time, a single obstructive event. 

So here's the thing: I've been using a CPAP for three and a half years and in spite of multiple titration studies, they weren't able to get me fully treated. I figure out the problem using Sleepyhead, go to a specialist, he changes the settings, and all of a sudden I've finally got the correct CPAP therapy. 

Is this kind of incompetence common? I'm kind of stunned.
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#2
RE: Incompetent ENT? Or sleep clinic? Both?
Its even worse, you were lucky, most people either are told to stick to the wrong therapy because none listens to them, if they continue to complain they get referred to a psychiatrist, others just stop their therapies.
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#3
RE: Incompetent ENT? Or sleep clinic? Both?
(04-02-2019, 01:01 AM)michaelc5047 Wrote: Hello all,

Have been treated for OSA since October 2015. ResMed AirCurve 10 VAuto in BiPAP mode, pressure 11-15.  

My AHI never got to a clinically treated level -- usually stayed between 6-12 on a given night. Had multiple titration studies. My ENT told me about a year and a half ago: huh, yeah, it'll get better if you lose a little weight.

Last fall, as I started losing weight, my AHI started going up. I started looking at the SD card data in Sleepyhead and noticed I was having increasing Central events -- and the number was getting higher than my obstructive number.

Messaged my ENT this January, was very clear about what was going on, six weeks later finally had another titration study. I tell the nurse who monitoring me when she asked why I was having another study that I was having increasing CSA events. They tell my doctor after the results come back to have me up the pressure to 14-18. 

Is this kind of incompetence common? I'm kind of stunned.

Michael,

Unfortunately, they often get it very, very wrong!  My understanding is that Central Apneas do not get corrected by increasing pressure. The pressure normally needs to be reduced.  Of course they have to balance what else is going on with your charts.  The experts here will tell you exactly what would be the best considering all your information.

Btw welcome to the forum!!!  The good news is you'll be able to get the best advice possible here.  Click on the following link and look at  Fred Bonjour's post.  At the bottom are links to instructions on how to upload your charts here and what to include and what to leave out.  This will be an important first step on getting you on the right track.   Again welcome to the forum and good luck!

http://www.apneaboard.com/forums/Thread-...djustments
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#4
RE: Incompetent ENT? Or sleep clinic? Both?
Common? It's certainly not uncommon.
Most doctors do not even look at daily charts, only summaries. The daily charts are what tell you what is going on.
Over ventilation means you were washing too much CO2 out of your system therefore you didn't need to breath then Central Apnea.
Some of us, you, not me, are more sensitive than others and it makes a big difference.
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#5
RE: Incompetent ENT? Or sleep clinic? Both?
My sleep doctor was great. He worked with me and my AHI was less than 3 for years. Then a year and a half ago I had a perfect storm of pain causing issues. Torn rotator cuff, torn hip cartilage, and lower back disc rupture. My AHI average went up to about 8. I thought probably due to pain. After everything was fixed and pain gone my AHI stayed high. My sleep doctor had retired and all that is available here is a nurse practitioner. She thought I might need BIPAP and prescribed a new sleep study. They recommended a pressure of 8 and didn't try APAP because 8 worked for the short time they tried it before stopping the study. I have used a pressure of 11.5 for about ten years but I tried 8 and my AHI went up to over 11. Went back to the practitioner and she said there really wasn't a solution for my problem. I told her I would not accept that and I would start working with the pressure myself. She wasn't happy about that.
I changed my machine from fixed to auto and with some help from a forum member after several months ended up with a setting of 10.5 to 14 and got my AHI back down to less than 3. Going to make some more changes and see if I can go back to a fixed pressure.
So yes, there are incompetents out there.
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#6
RE: Incompetent ENT? Or sleep clinic? Both?
If you read through the threads on this forum, you will find you are in good company. The good news is, we are pretty darn good at getting these problems sorted out or moving you towards the right therapy. Post up some charts and let's get to work.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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#7
RE: Incompetent ENT? Or sleep clinic? Both?
Sounds like your doctors have been more hands-on than mine.

Guess I don't know which is worse: a doctor who doesn't give a flip, or doctors who can't figure it out.

Good news is you've got this forum, and there are wise people here who can help you figure out what's going on and what to do about it!
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#8
RE: Incompetent ENT? Or sleep clinic? Both?
All my sleep docs so far have been fundamentally pulmonologists that were certified as sleep specialists, not sure I’d be comfortable with one that came with the ENT side, though it could be fine, just have no experience.

In any case, my current sleep doc told me specifically that too high a pressure can trigger central apnea’s. It seems to be why a lot of doctors aren’t terribly comfortable with variable pressure machines. Mine was at first, but he seems to be realizing it’s fine, at least for me.
Geoffrey Rush as Philip Henslowe, (Shakespeare in Love) "I don't know. It's a mystery."
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#9
RE: Incompetent ENT? Or sleep clinic? Both?
That makes sense. But wouldn't an auto PAP know to stay as low as necessary while still keeping apneas away?
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#10
RE: Incompetent ENT? Or sleep clinic? Both?
I would think so, unless the low pressure was too high to be reasonable. But I suppose there might be people for whom that wouldn’t be true.
Geoffrey Rush as Philip Henslowe, (Shakespeare in Love) "I don't know. It's a mystery."
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