Finally got into the see sleep specialist

[KCFLY]

Background can be found here:

http://www.apneaboard.com/forums/Thread-...ral-Apneas

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(Here's the  brief overview of the past year and half if you don't want to read the old threads)

Started CPAP in Feb of 2017 after an in lab sleep study.  Apnea well controlled with avg AHI of .97 for nearly 9 months with a variable pressure of 8-11.
Centrals started showing up, getting worse over time.
Had new sleep study in lab in March 2018.  Confirmed centrals, confirmed BiPAP failed to control, recommendation to reduce pressure to fixed 8.0
Since then, have seen some obstructive events reappear (but not too many) and centrals continue.
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So, saw the sleep doc this afternoon.  Took my SD card in so they could see the data.

1st strike, they wouldn't download from the SD card, only from Resmed so they didn't get any data after June 1 as cell reception at my home is BAD and my machine rarely is able to connect and upload data.


2nd strike, he says I am tired because I need to get more sleep, not because of the apnea.

I refute all that with him and he finally agrees to change my settings to 8-15 for 4 weeks to see what will happen.  (last time I had pressure that high the centrals were in the 10-15 range.  I don't see this going well...)

If that fails, then he wants to treat my PLM (periodic limb movement)  My movement index was 27.3 with a total of 216 movements recorded during the last sleep study.

If that fails then he wants to consider BiPAP ST.

I do not have a lot of confidence in this plan, and really feel like ASV is what I need (just like Sleeprider suggested many months ago)  I just can't afford to buy one out of pocket.  So, I will continue this game until I run out of options trying to get insurance to pay for effective treatment.

Once again, thanks to everyone.  This community is such a great resource!

The attached file is data from earlier this week.

[DeepBreathing]

G'day KCFLY.

First thing to do is get those leaks under control. A lot of those centrals are being recorded during periods of high leakage (either above or near the red line of 24 L/min). The machine can't properly diagnose or treat events when there is a large leak going on.

Regardless, there are a lot of centrals happening and it doesn't look like straight CPAP will solve them. Some members achieve satisfactory results by going to a low pressure CPAP, but the results are often unstable, meaning you'll have some good nights and some bad nights. The object of the exercise is to have all good nights.

1st strike, they wouldn't download from the SD card, only from Resmed

Why? Do they know what they are doing?

[KCFLY]

G'day KCFLY.

First thing to do is get those leaks under control. A lot of those centrals are being recorded during periods of high leakage (either above or near the red line of 24 L/min). The machine can't properly diagnose or treat events when there is a large leak going on.

Regardless, there are a lot of centrals happening and it doesn't look like straight CPAP will solve them. Some members achieve satisfactory results by going to a low pressure CPAP, but the results are often unstable, meaning you'll have some good nights and some bad nights. The object of the exercise is to have all good nights.

1st strike, they wouldn't download from the SD card, only from Resmed

Why? Do they know what they are doing?

I think I just surprised them with the card, it seemed like they just rely on logging into Resmed to get the data.   I really don't think the nurse understood what to do with the card.  The doc seemed to understand and asked the nurse to do it.  It just didn't happen.  Very frustrating.

On the leaks, I am working on it.  I was trying a different sized pillow for the P10 that night and it did not work out.

[greatunclebill]

Get away from this quack and find a good pulmonologist board certified in pulmonology and sleep medicine.

[KCFLY]

Get away from this quack and find a good pulmonologist board certified in pulmonology and sleep medicine.

That was my thought too...  

In my defense, he was recommended and is a pulmonologist board certified in pulmonology and sleep medicine.

Doesn't change the fact that so far, I couldn't be any less impressed with the guy.

[Stom]

I think I just surprised them with the card, it seemed like they just rely on logging into Resmed to get the data.   I really don't think the nurse understood what to do with the card.  The doc seemed to understand and asked the nurse to do it.  It just didn't happen.  Very frustrating.

I just brought brought my laptop with the SleepyHead data on it to Kaiser. The RT was surprised by the detail in the 25 sample per second flow graph data from the SD card, something she apparently hadn't seen before from a ResMed machine. Her department relies entirely on the low res AirView data. She said it would take 20 minutes to upload a card into their system (as opposed to the 3 seconds it takes to import to SleepyHead on my computer), so it's not something they do. Seems like relying solely on AirView isn't just a Kaiser thing :-/

[Mosquitobait]

They don't get any real data from Resmed. All they get is AHI and hours used, which of course most of us find inadequate info. In the interest of your health and cost in $$ and time, you probably should have brought several pages of data with you from Sleepyhead. Would have possibly been a better visit.

I am surprised he isn't jumping on working on the movement issue. How is waiting going to help? ::Rolling eyes:: It's not like it's a minor issue for you.

[Tinman53]

Reminds me of the old saying, "What do you call the guy who graduated last in his medical school class? Doctor!"

Not all doctors are created equal. Some just seem to go with flow and don't seem to want to address the issues raised by the patient, just those issues he/she can see and recall hearing about in school.

Several years I recognized that my Primary Care Physician was one of those doctors. I fired him. His replacement listened to the issues I was presenting and sent me to a specialist who found some major issues with my heart. Undoubtedly this saved my life.

I always encourage people to remember that your medical team works for you - you are paying for their service, even if through an insurance company. Stand up and make sure your concerns are heard and addressed. It may save your life!

Good luck and I hope you find some answers.

[Sleeprider]

I think any "sleep specialist" that thinks the first go-to is a ST machine rather than ASV is a bit clueless. I have used the manufacturer machine descriptions including the intended use of the machines to teach other members how to get their doctors on the right track. For example, just read the summary of what each machine is used for on Page 5 of the Resmed Titration Guide https://www.resmed.com/us/dam/documents/...er_eng.pdf

Under ST you will find: "COPD, NMD, OHS and other respiratory conditions Patients weighing more than 30 lb (13 kg)
Under ASV you will find: "Central or mixed apneas, complex sleep apnea, Periodic Breathing (PB) Patients weighing more than 66 lb (30 kg)".

There is much more detailed information under each of the machines in the guide at pages 28 and 37. You can use a print-out comparing the two machines and tell the doctor, "this doesn't seem to be the right machine based on the manufacture's statement of intended use."

It's a simple but effective way to let Resmed refute your doctor's direction rather than you having to confront him as a layman.

[KCFLY]

I think any "sleep specialist" that thinks the first go-to is a ST machine rather than ASV is a bit clueless.  I have used the manufacturer machine descriptions including the intended use of the machines to teach other members how to get their doctors on the right track.  For example, just read the summary of what each machine is used for on Page 5 of the Resmed Titration Guide https://www.resmed.com/us/dam/documents/...er_eng.pdf

Under ST you will find: "COPD, NMD, OHS and other respiratory conditions Patients weighing more than 30 lb (13 kg)
Under ASV you will find: "Central or mixed apneas, complex sleep apnea, Periodic Breathing (PB) Patients weighing more than 66 lb (30 kg)".

There is much more detailed information under each of the machines in the guide at pages 28 and 37. You can use a print-out comparing the two machines and tell the doctor, "this doesn't seem to be the right machine based on the  manufacture's statement of intended use."

It's a simple but effective way to let Resmed refute your doctor's direction rather than you having to confront him as a layman.

Thank you for that link.  That should prove to be useful.