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Future BiPAP user.. Which machine to ask for?
#31
SleepRider,

I clicked the link you suggested and was dismayed as the sleep center I'm dealing with was listed first for my zip code.

That is, until I went back and noticed the little check box: "Only show AASM SleepTM capable sleep centers in my state".

WOW! Over 22 million people in So CAL, and only ONE approved center 75 miles away!
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#32
Herb, you are in a difficult place. You're going to have a conversation with your doctor in which he will discuss the results and you will counter your titration failed to achieve efficacy below 5 AHI, and you know how to get there and it isn't ST. You have done your own research, and based on that you're going to ask for ASV. Of course your doctor knows better. I would ask him how many central and mixed apnea patients he treats and get him to explain exactly how he justifies prescribing a BiPAP ST when study after peer-reviewed study demonstrates it is an inferior solution to your problem.

When it is all said in done, let him know you want copies of all studies, recommendations and a referral to a qualified doctor who recognizes the value of ASV. You might as well p*** him off if he doesn't come around. If on the other hand he listens, interacts and gives useful feedback, then you won't need that referral.

You have the right to decline any recommended treatment or procedure. You have the right to a second opinion, however you may need to pay for that encounter. You have the right to all records, test results and prescriptions that are electronic or written records by your doctor. If you don't get what your want, you are within your rights to disagree with the recommendations, decline the prescription and obtain a second opinion and correct prescription.

PS Take notes, so you have your questions to ask, and note if the doctor is unresponsive to your questions. I'm sure he has a great idea why you should be using ST rather than ASV, but it would be interesting to hear.
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#33
Trust me, thanks to your help, and the help of many others here, I'm on it. Big time.


I've been gathering research studies, and got my electrocardiogram report to prove I'm not contraindicated for AVS (LVEF <45%).

So, I'm putting my folder together right now in preparation for tomorrow.

I just hope I'm clear headed enough tomorrow morning to have all the medical terms straight.

It's like cramming for an exam.


I just find this whole thing strange.

Like I posted earlier, in all my searching,  I have not found one scientific report noting BiPAP ST is superior to ASV for central sleep disorders.

And as you said, the vast majority report superior results with ASV. 

It's crystal clear.

It should be standard practice now.

The cost difference between a Resmed BiPAP ST and ASV machine is less than 10%!



It just makes me wonder why the resistance to prescribing ASV for patients with central sleep disorders.

ASV seems reserved for those with congestive heart failure, just because the earliest studies were on those patients.


How much time and money is wasted working up to the correct machine?

Doctrinaire dogma.
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#34
SleepRider,

In gathering my paperwork, I just went over the polysomnography reports I picked up from the sleep center earlier today.

This time, they included the first night's results:
CONCLUSIONS: 
1. evidence of moderate obstructive sleep apnea syndrome based on 35.0 events per hour
2. lowest oxygen saturation was 75
3. Central Sleep Apnea with Cheyne-Stokes Respirations

DIAGNOSIS: Moderate Sleep Apnea Syndrome (G47.33).



The second night with titration: (the one I reported to you)

CONCLUSIONS:
1. The previous study showed moderate central sleep apnea with cheyne-stokes respirations.
2. This study showed improvement of the respiratory events and oxygen saturation, the best results were noticed at a pressure of 11/6 cmH2O and decreasing the apnea/hypopnea index to 7.3 events per sleep hour.
3. lowest oxygen saturation was 82

DIAGNOSIS: Moderate Sleep Apnea with Cheynes-Stokes Respirations (G47.37)

This report has no mention of obstructive sleep apnea syndrome.

Everything we have discussed so far was based on the second (titration) night report, the only one I had.

I had no idea I have obstructive sleep apnea.

Does this change the situation?

Will the Resmed aircurve 10 ASV handle the obstructive apnea?

Thanks.

Edit: BTW, the recommended machine is ResMed S9 VPAP S/T with EasyBreathe
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#35
I think perhaps he just hasn't studied for five years. The S9 is discontinued and that current machine is an Aircurve 10 ST. For periodic breathing and Cheyne Stokes the ST is not an adequate intervention and the ASV is the only real choice. If he was concerned about your LVEF then you have that side covered with your records. It's the only thing I can think of that might have had him thinking ST rather than ASV.

ASV is intended for mixed apnea events including obstructive. Most members using ASV were originally diagnosed with obstructive apnea, and developed CA after using CPAP. Very few have pure CA events. That is why it has an automatic variable EPAP in the algorithm (unlike ST). The EPAP automatically responds with higher pressure to obstructive events, flow limitations and snores, while pressure support treats CA, H and CSR; and it only uses the PS necessary to bring the breathing rate and volume to the patient's normal. ASV is like using APAP for OA, but it has the breath by breath capability to deal with central apnea or respiratory insufficiency. If you need PS of 4 on one breath and 6 on another for CSR that's what it gives to make your breathing waveform normal. The ST is incapable of that and is like a fixed CPAP with fixed PS and the only advanced capability is a timed breath for CA. It's primitive. Furthermore, pressure support (bilevel) on every breath causes increased CA. So on ST what happens is you end up with persistent CA and you never get a spontaneous breath. The ASV will back off and let you breath normally at auto-EPAP pressures without PS as long as you continue to breath spontaneously. That is why I emphasized the ability to use a PS range that includes zero as a minimum.

I think you're well prepared, and hope you have an amicable conversation that ends with your satisfaction. There is no defense for ST except a lack of respect for you and the body of evidence that ASV is a superior technology that is more effective, comfortable and likely to succeed.
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#36
Hi SleepRider,

You must be staying up late there in PA.

I was expecting to wake up and read your response over my morning coffee.

Thanks for putting me at ease.


I just finished putting my reports together, and I guess last minute desperation helped me find a lot of supporting reports.

My favorite is from the American Academy of Sleep Medicine GUIDLINE UPDATE May 2016:
http://www.aasmnet.org/Resources/Practic...rs/CSA.pdf

(Note these studies concerned heart failure patients (CHF), even mild cases.)

On page 25 it states BiPAP ST is to be used only after ASV (and others) have failed.
In the page 26 summary, it states ASV was superior to CPAP, (gave percentage improvements) in addition to much higher compliance results.

A different report compares ASV to CPAP and BiPAP SV where only ASV reduces AHI to normal.

I have a bunch more, but suffice it to say I'm ready when he asks "On what data do you base your request?"

I'll be back tomorrow with the big update.
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#37
UPDATE: The meeting with the doctor

Well.... Here's how the doctor and I ended up red-faced leaving the room in different directions.

He started off summarizing the sleep study hourly report going over the various titration adjustments that were made during the night.

This exercise was for the sole intention of supporting his conclusion that BiPAP ST was the correct decision knowing that I was there to ask for ASV.

I tried various rebuttals, trying to convince him to change his order to an ASV.

He started drawing waveforms showing Cheyne-Stokes, and I said "Yes I know the patterns".

OOPS.. things started to go South.

"I'm the doctor, and I know more than you, right?"

Then he went on and he stated that the other center in the network doesn't have techs who know how to do a proper sleep study, and they keep recommending ASV because "they don't know what they're doing".

I attempted to ratchet things down a bit trying to get him to see my situation by explaining the fact that my father died of congestive heart failure, and ASV has shown improvements in heart patients, but before I could go further he cut me off.

"ASV is not for patients with congestive heart failure" he said forcefully.

When I countered "Only in cases with LVEF under 45", he got miffed and repeated his previous statement louder.

I countered with "ASV was tested and developed FOR congestive heart failure patients".

Again I hear "ASV is NOT for Congestive heart failure patients".

I then took out the American Acadamy of Sleep Medicine Guidline Update, May 2016, and before I could say a word, he stated "I am a member of the American Acadamy of Sleep Medicine and cut me off.

I pushed the matter, reading the line in the update "BPAP-ST may be considered only in the those who fail CPAP, ASV, and oxygen therapy".

He repeated "ASV is not for congestive heart failure patients" even louder.

I tried to hand it to him saying "Here, you can keep it", and he replied "I don't want to read that"

I kinda lost it, feeling my face flush, and said " This is an update from the American Acadamy of Sleep Medicine, and you won't even LOOK AT IT?!"

He got up and said "I'm not going to change my order".

I stood up saying "I'm getting a second opinion" to his back as he stormed out.
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#38
Herb, kudos in not backing down. Best to ya in getting what you already know you need out of this. Hopefully the rest of your day goes better than the meeting with Dr. Know it all. I just Bebe a sinking feeling I'm seeing his twin soon...
Sarcasm is a hobby of mine. I am not sarcastic on serious issues, implied or otherwise.
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#39
(03-30-2017, 12:43 PM)SarcasticDave94 Wrote: Herb, kudos in not backing down. Best to ya in getting what you already know you need out of this. Hopefully the rest of your day goes better than the meeting with Dr. Know it all. I just Bebe a sinking feeling I'm seeing his twin soon...

Well, I knew what I was in for based on various patient reviews.

Plus the "cosmic cues" that dawn on  me.

For instance, the last time I was driving out of the sleep center parking lot, the Slackwax song: "Flying High" came on.
The lyrics struck me as kinda prophetic: "Leavin' it all behind, Ain't comin' back no more". Good song BTW. 

Anyway,
Have you searched for reviews of your doctor?

Thanks for the support, I need it right now.
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#40
Herb, I'm in Colorado skiing, thus the later hours. I think your appointment went as expected for a hard headed, know-it-all doctor. At least he gave you a clue where to go for your script. Just talk to "that other" Sleep center and have them arrange to transfer your paperwork to them, and schedule an appointment to "discuss ASV prescription". It's okay to state you have irreconcilable differences with your previous doctor and this is not just a second opinion, but the right opinion. They will probably just smile knowingly. This will work out.

An interesting aside, it is not known if ST treatment is any safer than ASV. There just hasn't been a study. The Resmed study results were completely unexpected, and I'm sure a large part of it was the admission to the cohort of terminal CHF patients. I lost my dad to CHF and I'm not sure the normal course at end-stage is something I would encourage someone to take rather than have the relief of ASV. Respiratory failure vs sudden heart infarction it a tough choice, and the doctors will side with not introducing something that "might" be causative.

Glad you are not in that boat, and you really can't go with ST with what you know to be the best medical option that can contribute to your quality of life.
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