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Anyone Know a Doc Comfortable with ASV in NC?
#1
Anyone Know a Doc Comfortable with ASV in NC?
Hey Folks,

Is there anyone with an ASV in North Carolina whose sleep doctor is knowledgeable about and comfortable with treating treatment emergent central apneas with ASV?

I ask because I appear to be on the fail to ASV path due to treatment emergent central apneas. My first sleep doc barely seem like he could read a sleep study and kept wanting me to do additional CPAP titrations despite my apneas + hypopneas being fixed and treatment emergent central apneas being my residual problem. After ~ 6 months I realized he was a dead end. My current sleep doc of six months suspects I have narcolepsy because “mild sleep apnea doesn’t make people this tired and sleepy.” He’s a nice guy, and smart even, but I don’t think he’s treated much mild sleep apnea or treatment emergent central apnea because I have zero symptoms of narcolepsy (no cataplexy, no sleep related hallucinations, and no early onset REM sleep during sleep study or any other time). He prescribed a BiPAP + BiPAP titration, but has indicated he wants to get me tested for narcolepsy. The BiPAP titration showed a ton of centrals, and then no centrals at a PS of 6, go figure. but when I take the BiPAP home, I get 10-25 centrals/hour unless I set trigger and cycle sensitivity to very high, which then produces periodic breathing and long pauses that aren’t quite long enough to be scored as centrals. I am also having difficulty sleeping for more then 1-2 hours with BIPAP without waking up. My current doc has brushed off my questions about ASV, flow limitations, frequent arousals, and treatment emergent central apneas. He also doesn’t seem to understand how changing trigger sensitivity can reduce scored central apneas. I’m concerned he will not be interested in ordering an ASV titration, so I want to have a back-up plan if this is the case.

Thanks!
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#2
RE: Anyone Know a Doc Comfortable with ASV in NC?
Aero, would you consider buying a used ASV to demonstrate your efficacy to your doctors, or at least to get effective therapy? On DotMed you can find a listing for Resmed S9 VPAP Adapt BIPAP #36007 Unit is GUARANTEED to be in working order. Actual machine pictured. Unit has 8048 hrs, at $440. There are several units on that site that would be less expensive for you to simply buy than to try to get actually competent medical treatment from the specialists. Once you have the data from the ASV to contrast against your CPAP data, a lot of your task is actually done. It's hard for the doctors to ignore that evidence.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Anyone Know a Doc Comfortable with ASV in NC?
You might also look for a doctor who does EERS while you’re at it, though that could be harder to find.

Searching for research published by doctors in your area can be one avenue (for either).

Good luck!
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#4
RE: Anyone Know a Doc Comfortable with ASV in NC?
You might try UNC or Duke. Being teaching hospitals they may be more up to date on the latest technologies.

RTP (Research Triangle Park) is loaded with medical and pharmaceutical companies and they are usually looking for subjects to participate in studies. You might be able to find an open study related to Sleep Apnea.
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#5
RE: Anyone Know a Doc Comfortable with ASV in NC?
(01-12-2022, 08:05 AM)Sleeprider Wrote: ...Once you have the data from the ASV to contrast against your CPAP data, a lot of your task is actually done. It's hard for the doctors to ignore that evidence.

Actually it's not hard for them to ignore any evidence that they don't want to see!

When I went to my appointment they couldn't read the card from my vauto. I did some work on the card so the the ResMed software wouldn't reject it, and mailed it to them. I got a phone call when they got it, and the very nice nurse said that they could read this card.

Later that day this message appeared in MyChart:


Quote:We recommend using qualified durable medical equipment facilities for the management of PAP therapy.  Your current device is ASV and it is not required for the treatment of obstructive sleep apnea. We may not be able to help monitoring the device that we did not recommend.
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#6
RE: Anyone Know a Doc Comfortable with ASV in NC?
Thanks for all the suggestions! I will check out DotMed. Good ideas re RTP and the universities. Unfortunately, my first doc was at UNC, and my current doc is at Duke.
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#7
RE: Anyone Know a Doc Comfortable with ASV in NC?
(01-12-2022, 01:53 PM)AeroM Wrote:  Good ideas re RTP and the universities. Unfortunately, my first doc was at UNC, and my current doc is at Duke.

Ok, swing and a miss.  Two strikes for me!  Grin

Pinehurst is another area to look in.  Very affluent area (lots of $$$$$ around there).  I have been referred to specialists there on a few occasions for other health issues.  Whether the medical care is better there is subjective, but it's another option.
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Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.

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#8
RE: Anyone Know a Doc Comfortable with ASV in NC?
AeroM, this is probably a question more suited to your therapy thread, but have you ever confronted your doctor/specialist on his diagnosis of obstructive sleep apnea? You described an initial diagostic test with 3-centrals and 53 hypopnea, and a titration test with 3 OA, 55 CA and 3 hypopnea. This is classic for complex sleep apnea syndrome and central apnea, not obstructive sleep apnea. You need the diagnosis to be reconsidered and an order submitted for ASV titration. What is so hard about that? You are on the path to ASV, you just don't know it. You failed CPAP and have been dispensed a Vauto for just under one-month. This is the normal sequence, and you will ultimately have to demonstrate failure of bilevel to be considered for ASV. These trials and failures are not rules made by your doctor but comes from Medicare and most insurance.

We have a wiki that describes the usual process leading to getting "advanced positive air pressure therapy" http://www.apneaboard.com/wiki/index.php...P_Machines With that in mind, you are well on your way, but unfortunately you need to make a painful decision. You have been given suggestions in your therapy thread that coached you on how to minimize central sleep apnea. This has worked to lower your AHI to a level that may be deemed acceptable by your medical team, although we understand that your sleep is still in tatters due to unresolved flow-limits and typical problems with someone treating complex sleep apnea with a bilevel without backup rate. You may need to remove optimizations like high trigger sensitivity in order to move forward and fail bilevel, and thereby be eligible for ASV titration. It won't be fun, and it seems counter-intuitive, but once you demonstrate bilevel cannot provide the minimum efficacy needed you can then confront your doctor with the need to reconsider your diagnosis and appropriate therapy with ASV. Have you asked your doctor specifically about his experience with treating complex and central sleep apnea with ASV?

Quote:Initial Sleep Study:
I was diagnosed with mild sleep apnea (AHI = 8.9; Supine AHI 11.3/h). My SPO2 went to a low of 91%. During the study, I slept for 6.3 hours and had 3 central apneas and 53 hypopneas. If obstructive apneas, mixed apneas, or RERAs happened, they weren't recorded. There were 0 periodic limb movements (PLM = 0), 14 limb movement events with an index of 2.2. Finally, there were 32 spontaneous arousals with an index of 5.1 arousals/hour of sleep. Snoring was noted. Heart rate was fine and everything else was normal.

1st CPAP Titration Sleep Study:
Over the course of the night, my pressure was titrated up from 5 cmH2O to 9 cmH2O. The study states that I "responded well to 9 cmH2O, but there continued to be some respiratory events along with flow limitations, so a pressure of 10 may be more optimal." I slept for 7.2 hours with an AHI = 8.4. They noted 3 obstructive apneas, 0 mixed apneas, 55 central apneas, and 3 hypopneas. Total AI was 8.0. There were 5 RERAs for an RDI of 9.1. Cheyne Stokes was not noted. SPO2 went to a low of 88%. There were 48 periodic limb movement events (PLM = 6.6). 6 of these were associated with arousals (0.8 events/h) There were 108 limb movement events with an index of 14.9. Finally, there were 28 spontaneous arousals with an index of 3.9 arousals/hour.

2nd CPAP Titration Sleep Study:
My pressure was titrated starting from a minimum CPAP pressure of 8* cmH2O up to a maximum pressure of 11* cmH2O. The study states the “optimal CPAP pressure was noted at 11 cmH2O.” I slept for 7.5 hours. I had a total of 37 respiratory event(s) for an AHI of 5.0 per hour. There were - obstructive apnea(s), - mixed apnea(s), 33 central apnea(s) and 4 hypopnea(s). These respiratory events were associated with arousals and oxygen desaturation to a low of 90.0%. A total of 9 RERAs were noted for a RDI of 6.2. Cheyne Stokes was not noted. There were a total of 18 periodic limb movement events with a PLM Index of 2.4, 5 of which were associated with arousals, which calculated to 0.7 event(s) per hour during sleep. There were a total of 61 limb movement events with an index of 8.2. There were 107 spontaneous arousal(s) noted with an index of 14.3 arousal(s) per hour of sleep.

1st BiPAP Titration:
During this titration study, BPAP pressures between 8/4 cwp and 11/5 cwp were used. I slept for 5.8 hours. The study states that “at BPAP pressure of 11/5 cwp, the best sleep was noted, and the AHI was 1/hr with a TST of 208 minutes at this pressure.Transitional central respiratory events were noted at lower BPAP pressures.”

The apnea/hypopnea breakdown was as follows: 34.1% obstructive (1 apneas, 13 hypopneas), 63.4% central (26 centrals), 2.4% mixed (1 event). AHI for the night = 7/hr) During sleep, the baseline Sa02 was 98% with an Sa02 nadir of 91%. The desaturation index was 4/hr. The arousal index was 20/hr for the night and the spontaneous arousal index was 14/hour during the 208 minutes that I achieved an AHI of 1. The overall periodic limb movement index was 3/hr with a periodic limb movement arousal index of O/hr.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: Anyone Know a Doc Comfortable with ASV in NC?
Is Savanah GA close enough?
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#10
RE: Anyone Know a Doc Comfortable with ASV in NC?
Good to know, thanks!
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