UARS Bipap/ASV consensus

[Seb-Sanfilippo]

Where does the consensus on the efficacy of Bipap and/or ASV for UARS come from?
Is based on people's experience on this forum and other forums or is based on clinical studies? Or something else I missed?

[lazarus]

Dr. K's anecdotes do not a "consensus" make.

I mean, unless he's considered, like, the Chuck Norris of sleep medicine, or something.

I'm actually a Dr. K fan, but I don't consider him to be a consensus/Force of One.

I think of him more as a cutting-edge, outside-the-box sort of practitioner for those who haven't found success with consensus-based treatment.

I think most sleep docs probably roll their eyes whenever they hear anyone use ASV and UARS in the same sentence.

But then gain, most roll their eyes whenever UARS is discussed as if it were a thing, anyway, in the context of treatment decisions.

But hey, I ain't no consensus, myself, neither.

So if you're looking for a related study from Krakow et al., there's always this one: https://www.sciencedirect.com/science/a ... 701930104X

Their claim in the above:

The larger treatment effects with ASV compared to CPAP resulted in significantly lower residual RERAs and flattening frequencies, presumably due to ASV delivery of significantly higher inspiratory pressures and significantly lower expiratory pressures. . . . Overall, these technological advantages yielded greater patient comfort, superior objective responses, and easier adaptability than traditional CPAP.

I personally refuse to take that at face value, given the small number of patients and the strict criteria for inclusion. But I acknowledge that Dr. K still may be following an interesting lead or two with his approaches, nonetheless.

[robysue1]

Piggybacking on what lazarus has said:

I don't think there is (yet) a medical consensus on the diagnostic criteria for UARS and I certainly don't believe there is a consensus that the first line of treatment for UARS should be bilevel (i.e. bipap) or ASV therapy.

Yes, Dr. Krakow advocates for immediately using bilevel, but it's worth noting that when he was still practicing, Dr. Krakow's main clinic was at relatively high elevation and things can be different once elevation is involved. At any rate, to the best of my knowledge, his ideas of how to best treat UARS have not been adopted or endorsed by a significant number of sleep doctors.

And then there's this: If a patient is in the US and expects their health insurance (including Medicare or Medicaid) to pay for the machine prescribed to treat UARS, the insurance company's requirements must be met. It's not clear at all whether Medicare or Medicaid would pay for any machine to treat a person with a diagnosis of UARS instead of OSA. And if an insurance company is willing to pay for an xPAP machine to treat a person with UARS, then that insurance company is going to insist on the patient being started out on CPAP/APAP, just like they do for OSA patients.

The rationale (from the insurance side) is simple: If CPAP/APAP works, there's no need to pay for a machine that is twice as expensive (standard bilevel) to four times as expensive (many ASV machines) as a simple CPAP/APAP machine.

So the insurance company usually insists a patient start out on CPAP/APAP. And if the patient "fails" at CPAP/APAP, then the insurance company will consider allowing the the patient to be switched to ordinary bilevel (including auto-bilevel) where "ordinary" bilevel means a machine that does not have a so-called "T" mode where it will attempt to "trigger" inhalations. Usually to have an insurance company pay for an ASV machine, the patient will need a diagnosis that involves central sleep apnea and a failure when put on ordinary CPAP/APAP and when put on ordinary bilevel therapy.

If a person is willing to pay 100% of the costs out-of-pocket, however, all it takes is a doctor who is willing to write the script for the desired machine for the person to buy a machine from a DME or on-line DME.

If a person is desperate to try out a bilevel or ASV and cannot get a script or cannot afford to pay for a machine from a DME out-of-pocket, there's always the grey market: Bilevel PAP machines and ASV machines are harder to find on Craigs list and similar tools for selling unwanted possessions, but they do show up occasionally. But these private sales of course are not regulated, and it's always Buyers Beware. Still, through the years a number of folks on the forum have been able to move to a fancier machine through this route.

[chunkyfrog]

On the upside, by the time many patients get these machines,
they may be terminal, freeing up a gently used machine for resale.
UARS is not contagious, so pre-owned is not necessarily an issue.

[Rubicon]

I think of him more as a cutting-edge, outside-the-box sort of practitioner...

I think of him as "talking shit".

Remember when he was treating "expiratory instability"? And his images submitted for "evidence" suddenly disappeared when I pointed out they could be ballistocardiographic artifact? Too bad he didn't burn all the evidence before some resourceful poster saved and reposted them.

We coulda talked about floppy palate but he ran off too soon.

In re: ASV, ASV is bilevel that thinks. In the link, he doesn't compare ASV to bilevel, he compares ASV to CPAP, so I would say the results are to be expected. If a study is done that comares bilevel to ASV, then this would be taken more seriously.

Frankly, I would have liked to see the raw data. As does this researcher:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933285/

[lazarus]

Remember when he was treating "expiratory instability"? And his images submitted for "evidence" suddenly disappeared when I pointed out they could be ballistocardiographic artifact?

Vividly.

I doubt he'll ever again make detailed pronouncements in a public forum about results tracings without running his words by a trusted, experienced RRT first!

I still give him some credit for trying to be helpful to the outliers at the edge of the bell curve. Although, it's mostly his psychobabble rap for the PTSD sleep people and others that I'm more a big fan of, as far as his published work for the public.

I give much, much more weight to your opinions than mine on the matter of equipment choice, of course. But I think his positive results may be mostly from the added attention and coaching that his patients get more than anything else. And I can't even take any credit for that thought because I'm probably just parroting something -SWS said back then.

[chunkyfrog]

Celebrity can be so cruel.
It is addictive--yet many live in fear of being discovered as imposters.
It's the only thing that makes this frog humble.

[mper!?]

Hi,
_ Just add my own 6-year experience on PAP's. I have moderated OSA and UARS (typical flat top waveforms, etc). Have gone to brick CPAP (lost my time and money during 1 year), APAP (lost my time and money during 1 month), and then the Bilevel aircurvve since then (overnight rounded wave forms with the magic of moving from pressure support lower than 4 to > 4)
_ in all these forums, I am afraid I have seen very very few cases on people working out their flat top curves to rounded ones , with PS < 4.0. Still have problem on running smoothly throughout REM stages (using collar, side sleeping, etc; but doing rather well with UARS + RLS
_ don't much about ASV, other than many disasters in the forums out there.
_ Therefore, I modestly think everybody with UARS should give a chance trying a Bilevel to start with.

all the best

[lazarus]

Celebrity can be so cruel.
It is addictive--yet many live in fear of being discovered as imposters.
It's the only thing that makes this frog humble.

Personally, I think you deal with your fame very well.

[chunkyfrog]

. . .
Personally, I think you deal with your fame very well.

I realize that I, too, may be little but a flash in the pan.