Anyone Know a Doc Comfortable with ASV in NC?

[AeroM]

Who do you recommend in Savannah, Georgia, Gideon?

[Gideon]

Barry Krakow

[AeroM]

Hey sleeprider, de-optimizing my BiPAP is definitely one path I m considering, it probably has the highest chance of success with insurance, although it seems like the most painful option because my central apneas with machines are typically longer and more frequent than the hypopneas I experience as a baseline. I haven’t asked my current sleep doc to reconsider the diagnosis. He inherited, for lack of a better word, that diagnosis from the first doc, so he may be willing to reconsider it, but he seems pretty focused on the possibility that I have narcolepsy because he doesn’t think mild sleep apnea can cause this degree of daytime sleepiness. I spoke to both docs about the central apneas and ASV, and the first doc basically ignored everything I said, so I dropped him. My current doc seems more open-minded and frankly, smarter, but when I mentioned all the spontaneous arousals on the BiPAP titration and ASV, he said spontaneous arousals were a data point they collect and don’t know what to do with yet, and as far as the ASV, he said I was getting ahead of myself because I need to fail BiPAP and BiPAP with a back up rate first. Thinking back to your own titrations, did any of you have a lot of “spontaneous arousals” (aka arousals of unknown cause) that were fixed when you got to the right pressure/machine? Also, how quickly could you tell you were on the right track once you got the right machine? With all the wait times for machines and titrations, I’m probably looking at a year of failure if I go that route and that seems like a long time to suffer because of some institutionalized red tape.  

The alternative is to explain the situation to my primary care doc, and see if he is willing to prescribe an ASV that I would probably need to pay out of pocket for. ASVs are a lot of money, but  this sleep stuff has completely taken over my life, and I’d be willing to pay a lot to have it fixed at this point. The one thing that gives me pause is, what if the ASV doesn’t do the trick because it turns out I have sleep disordered breathing and something else, eg. PLMD or lord knows what else. In that case, I’m down a a bunch of money and I’ve lost a sleep doc by going around him with my PCP. Also, do ASVs typically need a titration study or do they work as is for most people?

 I took a look at the machines you found on DotMed, and I am tempted. How do you know the blower, etc still works enough to provide effective therapy, and are the insides easy to clean out the dust and all the other stuff that collects around the important pieces over time? Also, have the algorithms changed between the S9 and the 10?

My next appointment with the sleep doc is in March, so I have some time to figure out how best to proceed. Thanks for all of your responses. You are all very resourceful and experienced and I truly appreciate it.

[Sleeprider]

Arousal is common with central events as longer apnea will spike adrenaline and all the bad stuff that goes with it. It really depends on the individual whether breathing resumes gradually as CO2 levels rise during the apnea or hypopnea, or if the respiratory drive lags until acidosis reaches an acute level that triggers all the "all hands on deck" adrenaline response. Clearly we see many complaints of chronic fatigue and dissatisfaction with sleep quality in most people with even mild or moderate CSA in CPAP and BPAP therapy. A member "Spy Car" had relatively low complex sleep apnea events, but lots of fatigue from arousals, to the extent his work and family life was affected. His story on ASV is here http://www.apneaboard.com/forums/Thread-...ht=central This member really didn't have the conditions I normally expect to be approved for ASV, but he persisted with his doctor and got it. You can see some pre-ASV conversations here http://www.apneaboard.com/forums/Thread-...#pid221059

I think it is encouraging your current doctor is more open-minded and actually acknowledges a potential ASV future, and is clearly following a very pragmatic path of machine trials and failure. My biggest concern is one of the steps he want to submit you to is BPAP with Backup. That is translated to a bilevel ST machine (spontaneous timed). These machines are all single fixed IPAP and EPAP pressure with a timed trigger to IPAP when a breath does not occur in the expected time. For example, the settings might be ST mode, IPAP 16, EPAP 11 (PS 5) with BPM 12 (breaths per minute). We see this very often on the forum, and not a single person experiences good therapy and satisfying sleep. Go ahead and search "Aircurve ST" on the forum and you will see the horror stories. Here is a story from Brandon who transitioned from ST-A to ASV http://www.apneaboard.com/forums/Thread-...#pid347202 Here is LarryM who arrived on the forum with ST and moved to ASV http://www.apneaboard.com/forums/Thread-...evel+ST%22

ST is intended to provide improved ventilation for patients with COPD, Neuromuscular disorders and obesity hypoventilation. You must understand how these machines work and their intended therapy as described by the manufacturer in order to intelligently discuss them with your doctor and avoid this unnecessary pain. Fortunately, you can get this knowledge by reading the Resmed Sleep Clinic Titration Guide https://document.resmed.com/en-us/docume...er_eng.pdf This source has very easy to understand principles of titration for each type of machine. We have used these principles with you to optimize your therapy. You must minimally read about ASV starting at Page 28 and ST starting at page 37. READ IT! Copy it and use this with your next discussion with the doctor. I also suggest you read the CPAP and Auto Bilevel sections, but you must understand ST is intended for pulmonary disease and obesity, not central sleep apnea. That is exclusively the purview of the ASV.

Finally the machines on DotMed. The sellers of these machines test them for proper operation and offer a guarantee they work. Most of the sellers are associated with a DME or clinic and sell used and surplus out the back door. The Resmed S9 VPAP Adapt $36007 is an auto-ASV using the same algorithm as the Aircurve 10 ASV. The #36006 uses a fixed EPAP pressure (no auto-ASV) but still has a fully functional adaptive pressure support. The S9 is an older, discontinued model, the major difference being form-factor. The therapy algorithm is identical, but data recording to the SD card is a bit more fussy, and requires some care not to corrupt the SD card. These machines have typical life-spans of 22,000 hours, so a machine being sold with up to 10,000 hours still has a lot of useful life. The use of this machine provides immediate therapy relief and allows you to demonstrate efficacy and shortcut the tests and trials your doctor will submit you to.

Here is an example of someone that just joined the forum, who is being required to use ST. His doctor is happy with this improvement. http://www.apneaboard.com/forums/Thread-Pressure-drop

[SarcasticDave94]

I realize everyone's therapy is a bit different, but if your CA carries on like mine, the BPAP without backup rate is going to be terrible. If yours goes this way after a reasonable attempt, exhausting the settings, chalk it as a fail. Don't handcuff yourself to the insurance and doc time restraint that you will fail in X months. If you believe you've failed, push for the next step.

CA will always be consistently inconsistent. This hinders testing and treatment: testing issues because CA don't always show up in big numbers, and treating issues because it's very hit or miss, unless on ASV.

My opinion, squeak very long and loud about no-go on the ST. I bypassed that instant fail by doing that.

Had there been discussion about asking your more helpful doc to order an ASV Titration to build the data proving necessity for ASV?

[AeroM]

Yeah, I agree. I am definitely interested in avoiding ST. I will ask him about ASV titration when I meet with him in March.

[AeroM]

Thanks for the suggestion, Gideon. I consulted with Dr. Krakow. Very knowledgeable and helpful Doc. He is very supportive of ASV and is willing to speak to my PCP or sleep doc on my behalf.

[AeroM]

I bought a used ASV off DotMed, machine arrived quickly. Currently waiting for Advans CPAP to put in a clean, new blower. Thanks for all the support. It will be amazing if this works and I don’t have some other exotic sleep weirdness, fingers crossed!

[Sleeprider]

I assume you are changing the blower based on sanitation concerns?  There is no risk in using the used machines that we have ever seen, but nice that you can get that service.  When you're ready to set it up, post back and we can suggest the initial settings and offer some hints for success.  

[AeroM]

Yeah, I’m not concerned about biological contamination. I saw some videos of older blowers with a lot of accumulated household dirt in them, and I’ve been battling congestion - I have enlarged inferior turbinates that my ENT will trim if the sprays I’m using don’t work. So I want to make sure I reduce a sources of congestion before taking that step. More peace of mind than anything. Thanks for the ASV titration protocol.