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AHI (REM Sleep) should have said 66 not 6. I corrected it.

rogelah wrote:I returned from the VPAP titration and promptly fell asleep for 5 horus. Must have been the RT's parting comment,"He wasn't impressed by the ResMed Adapt SV's performance. This is the same RT who told me at 10 pm that this was the machine that would finally tell them what pressure or range of pressures I needed. "I only have to adjust it so that your airway is open and it does all the rest" or some words like that. "IMO", he continued, after telling me the machine was unimpressive, "your BIPAP titration was a better result."

They finally mailed me my summaries from the PSG and the BIPAP titration. Below is a list of the results (the numbers in parentheses are from the PSG.)

SLEEP ANALYSIS
Total Sleep Time in Minutes 252 (172)
Sleep Efficiency Index in % 70 (42)
Sleep Latency in Minutes 13 (16)
REM Stage Percentage 17 (9)
REM Latency in Minutes ? (80)
Stage 3 & 4 Percentage ? (10)
Arousal Index 71 (32)

SLEEP DISTURBANCE PARAMETERS
Total Apneas 119 (20)
Total Hypopneas 44 (154)
Respiratory Effort Related Arousals 45 (49)
Respiratory Effort Related Arousal Index 11 (17)
Apnea Index 28 (7)
AHI 39 (60)
Lowest Oxygen Saturation 75 (74)
PLMs 23 (0) (Mattress was the pit, literally)
PLM Index 0 (0)

Cardiac Dysrhythmias None (None)

Additional info from PSG s summary.

RESPIRATORY PATTERN
Central Apneas 0
Mixed Apneas 0
OSAs 20 (average length 42 seconds, longest 69 seconds)
Hypopneas 154
AI 7
AHI (supine position) 61
AHI (REM Sleep) 66

Comments gratefully solicited.

Well, at least the RT discovered the VPAP adapt SV is not well suited for your breathing disorder. They're going to have to continue experimenting with various non-standard treatment protocols. Not a particularly easy RX path for your, rogelah. But hopefully well worth while, once they get you squared away with the right treatment.

Don't know if I can stand another study at the sleep lab. Physically, it's taken a toll on my upper body from being manhandled in/out of bed (there's no room for me to bring my Hoyer lift in the van and no space to use it in the room even if I got it to the sleep lab.)

My next tact is to see if I can get them to understand that it is hypopnea due to weakened respiratory muscles that needs to be treated not the results of a PSG.

http://www.mda.org/publications/Quest/q152sleep.html is a good look at sleep labs, sleep specialists and others who are trying to treat muscle related respiration problems as simple as reducing the AHI.

Beyond Traditional PAP therapy
http://www.tsrc.org/psg/0907_beyond_pap.pdf

I just received the summary and prescription as a result of the VPAP study.

ASV VPAP (no substitutions) pressure support 6 cm, EPAP 9 cm.

Apneas 1
Hypopneas 140
RERAs 35
AI 0
HI 45
AHI 45
RERA Index 11
Lowest Oxygen Desat 65%

I continue to be concerned about the hypopneas as, to me, they indicate something other than ordinary sleep apnea.

rogelah wrote:I returned from the VPAP titration and promptly fell asleep for 5 horus. Must have been the RT's parting comment,"He wasn't impressed by the ResMed Adapt SV's performance. This is the same RT who told me at 10 pm that this was the machine that would finally tell them what pressure or range of pressures I needed. "I only have to adjust it so that your airway is open and it does all the rest" or some words like that. "IMO", he continued, after telling me the machine was unimpressive, "your BIPAP titration was a better result."

So above we see that the RT commented that you didn't respond to ASV as well as you did to ordinary BIPAP. And despite that they went ahead and prescribed ASV anyway?

rogelah wrote: ASV VPAP (no substitutions) pressure support 6 cm, EPAP 9 cm.

Well, I think I'd be looking for a new sleep center right about now:
http://www.sleepcenters.org/

I'd specifically interview candidate sleep specialists to find out how often they work with neuromuscular diseases.

Your current staff keeps summarizing your sleep studies focusing on ordinary obstructive SBD indicators: apneas, hypopneas. You need all that scored and summarized. But because you may have etiological/neuromuscular issues with respiratory effort, they should also be scoring, reporting, and possibly focusing on flow volumes (ASV is not as well-suited for hypoventilatory disorders as BiLevel S/T or even AVAPS machines are---based on such extremely "narrow-window" flow targeting).

Extended flow volumes should arguably be an essential part of your treatment focus as a patient with neuromuscular disease---who may be prone to either sustained or even erratic hypoventilation tendencies. More erratic hypoventilatory tendencies (versus sustained hypoventilation) can be reflected as excessive residual HI.

Your high residual hypopnea indexes thus may be more a reflection of inadequate/unstable neuromuscular effort than typical upper airway collapse. And treatment should be different in those two cases. Time for a second opinion IMHO.

In addition to the other comments, I would be really quite concerned about the listed desats. They would go hand in hand with the high hypopnea count (& lord knows how many & much flow limitation).

Clearly the Epap=9 is stenting ok. But that seems about the best you are getting. Tidal flow / volume are what you need in the right measures. It just looks a bit like you aren't getting them consistently based on the numbers shown. To my non medical mind, that seems likely based on the disorder you have.

DSM

Those are two very interesting links, rogelah and ozij.

rogelah wrote:http://www.mda.org/publications/Quest/q152sleep.html is a good look at sleep labs, sleep specialists and others who are trying to treat muscle related respiration problems as simple as reducing the AHI.

ozij wrote: Beyond Traditional PAP therapy
http://www.tsrc.org/psg/0907_beyond_pap.pdf

Excellent advice here:

-SWS wrote:Your high residual hypopnea indexes thus may be more a reflection of inadequate/unstable neuromuscular effort than typical upper airway collapse. And treatment should be different in those two cases. Time for a second opinion IMHO.

The Respironics presentation Ozij referred to has this slide that seems to me provide an answer (for neuro-muscular disorder) ...

DSM

And this slide as well ...

Hadn't heard from the RT on Friday so I called. The patient counselor (virtually clueless, reads from a prepared sheet of dogma) said they were meeting as we speak to review my case and she had no doubt the RT would be ordering the machine immediately afterward (I've heard that song before); but the news bite about the meeting seemed promising. Maybe it had galvanized them into a different perspective.

Didn't hear from the RT (no surprise there) so last night I decided to give the Autoset II another chance. Set it on auto with min PS of 12, max PS of 17, EBR of 1. I went to sleep.

Woke up after a dream trying to breathe. First thing I noticed was that there was little or no PS. My breathing was shallow and short. I remained like that for some time and no PS returned.

So I took several deeper breaths and PS returned. After some prolonged deeper breathing I fell back to my normal shallow and short. PS went away. OK, APAP is definitely not good for what ails me.

I feel like a pioneer! Circle the wagons!

Now I'm wondering if BIPAP S/T was tried during the BIPAP titration? I don't think so, but I don't really know. The sleep doc must not have been impressed with BIPAP because he ordered a VPAP ASV titration.

VPAP Adapt SV didn't impress the RT who did the titration.

I checked a couple of other sleep labs. Naturally they told me they could handle my needs even though the have no experience with MD.

For now, I'm sticking with a dog I know rather than a dog I don't.

rogelah wrote:Now I'm wondering if BIPAP S/T was tried during the BIPAP titration? I don't think so, but I don't really know. The sleep doc must not have been impressed with BIPAP because he ordered a VPAP ASV titration.

BiLevel is the generic term for BiPAP (the Respironics trademark) or VPAP (the Resmed trademark). Only one Resmed VPAP model offers ASV modality. The other Resmed VPAP models are more traditional BiLevel machines without that "narrow window" or "short flow-targeting" ASV feature. So a traditional BiPAP S/T titration can be applied to equivalent VPAP S/T settings, and vice versa. And a traditional BiPAP S titration can be applied to equivalent VPAP S settings, and vice versa.


The two near-equivalent machine choices that really do not seem to make a lot of sense for SDB that is based in neuromuscular disease are Resmed VPAP AdaptSV or Respironics BiPAP autoSV. Again that "narrow window" or "short sighted" flow targeting that is characteristic of either SV design is not ideal for lacking neuromuscular respiratory effort and/or sustained/erratic hypoventilatory tendencies such as that "shallow breathing" you just mentioned.

The machine choices that do make RX sense for SDB based in neuromuscular disease are Resmed VPAP S/T, Respironics BiPAP S/T, BiLevel S/T (by any other manufacturer), or Respironics AVAPS. Those BiLevel machines can all be run in either S or S/T mode, according to what works best. Additionally, the AVAPS model will allow you to optionally set a minimum flow-volume target. But specifically, AVAPS will maintain a fixed or constant flow-target value, unlike those "narrow window" and variable flow targets that are maintained by either SV algorithm.

rogelah wrote:For now, I'm sticking with a dog I know rather than a dog I don't.

Don't know which is the more appropriate exclamation here: woot or woof? Don't blame you for sticking with them under the circumstances, rogelah. They'll need some methodical trial and error. At least they have a fair portion of that trial and error under their belts (the respiratory effort kind). Hope they continue optimizing, though...

The BIPAP titration was done with a Respironics Synchrony. The "VPAP ASV" with a Resmed Adapt SV. I know the Resmed Adapt SV is capable of bi-level ST and so is the Respironics Synchrony. My question is, did they try it with either machine? And if not, why not?

I am of the opinion that my pulmonologist is in charge and has been thinking of this in terms of ordinary sleep apnea. The sleep doctor only reads the results and dictates his opinion. My brand of muscular dystrophy is being regarded as the same as ALS which gets more publicity and research; servo-ventilation is a touted as the answer for ALS.

FSHD is not usually associated with ventilation problems. Although literature is sparse there is some which promote ventilation support testing for those of us who are wheelchair bound.

The often quoted Medicare LCD L171 that covers ordinary sleep apnea (is there any such thing as ordinary) forces doctors to prescribe CPAP and show that it doesn't work so that they can try bi-level and then have to prove that timed is needed.

There is another LCD, L5023, that covers...among other things such as COPD, CSA and ALS...progressive neuromuscular disease. In this case if the patient has greater than or equal to a 45mm of Hg of PaCO2, or oxygen saturation of 88% or less for 5 minutes or more, or maximal inspiratory pressure of 60cm of H2O, or forced vital capacity is less than 50% predicted and the patient does not have COPD then the doctor can prescribe either bi-level S or bi-level ST without further testing or trial.

First thing Monday morning I am going to call and insist that they get someone in Neurology to review what has been done so far, the results obtained and therapy prescribed.

One nice thing about a large teaching and research organization is that they can reach out to other parts in other cities for consultation. Sometimes they just need to be prodded.

When all else fails there is also the ombudsman.

rogelah wrote:The "VPAP ASV" with a Resmed Adapt SV.

Right. Those two are the same machine: the "VPAP ASV" is really another way of saying "Resmed Adapt SV". That letter "A" in "ASV" designates "Adapt".

rogelah wrote:I know the Resmed Adapt SV is capable of bi-level ST...

Unlike the Respironics BiPAP AutoSV, The Resmed Adapt SV is not capable of BiLevel S/T mode. The Resmed Adapt SV will not allow you to set a manual backup rate or even a fixed PS value (that's the difference between IPAP and EPAP). That boils down to the Resmed Adapt SV machine not being able to run in ordinary BiLevel S/T mode or even ordinary BiLevel S mode.

rogelah wrote:...and so is the Respironics Synchrony.

Well the Synchrony has been discontinued for some time here in the U.S. Respironics still sells a Synchrony model in Europe that is virtually identical to the AVAPS model sold here. Here they sell the Synchrony replacement as the "AVAPS" model. Leave the optional "volume assurance" feature turned off, and that AVAPS machine is functionally identical in every respect to the previous Synchrony model.

rogelah wrote:My brand of muscular dystrophy is being regarded as the same as ALS which gets more publicity and research; servo-ventilation is a touted as the answer for ALS.

Servo ventilation? I was very well aware of "pressure support" ventilation (ordinary BiLevel S/T) for that application, rogelah. That's RADICAL news to me that an SV machine's scant 3 or 4 minute flow-averaging can somehow amazingly manage to cope with any sustained downward ventilatory drive or trend---such as those presented by neuromuscular disease, including ALS.

ALS or amyotrophic lateral sclerosis is a chronic hypoventilation disease. And servo ventilation is not usually considered suitable for ALS or anything like it. Perhaps you're getting the machine details just as confused as I would under the circumstances. No disrespect to you, rogelah. However, if your pulmo really thinks servo ventilation is suitable for ALS (or an ALS-like hypoventilation syndrome) then either: 1) you need a more machine-knowledgeable pulmo.... or perhaps 2) you have a contributing CompSAS component that is more prominent than your other contributing Sleep Disordered Breathing components.

rogelah wrote:FSHD is not usually associated with ventilation problems. Although literature is sparse there is some which promote ventilation support testing for those of us who are wheelchair bound.

Well, non-invasive positive "pressure support" ventilation by the way of BiLevel S/T has been standard fare. I'm still surprised to hear a doctor prescribe servo ventilation for any of that. If he prescribed the Respironics brand of servo ventilation (the BiPAP AutoSV), you could at least run the machine in traditional BiLevel S/T mode, BiLevel S mode, or CPAP mode as a fall back. But if he prescribes the Resmed brand, you can only run SV mode or CPAP mode.

rogelah wrote:One nice thing about a large teaching and research organization is that they can reach out to other parts in other cities for consultation. Sometimes they just need to be prodded.

When all else fails there is also the ombudsman.

Amen! Good luck, good sir!

rogelah wrote:I know the Resmed Adapt SV is capable of bi-level ST...

-SWS wrote: Unlike the Respironics BiPAP AutoSV, The Resmed Adapt SV is not capable of BiLevel S/T mode. The Resmed Adapt SV will not allow you to set a manual backup rate or even a fixed PS value (that's the difference between IPAP and EPAP). That boils down to the Resmed Adapt SV machine not being able to run in ordinary BiLevel S/T mode or even BiLevel S mode.

I stand corrected. Thanks.

rogelah wrote:...and so is the Respironics Synchrony.

-SWS wrote: Well the Synchrony has been discontinued for some time here in the U.S. Respironics still sells a Synchrony model in Europe that is virtually identical to the AVAPS model sold here. Here they sell the Synchrony replacement as the "AVAPS" model. Leave the optional "volume assurance" feature turned off, and that AVAPS machine is functionally identical in every respect to the previous Synchrony model.

I'm pretty certain it was the "older" model; it didn't have AVAPS on it anywhere that I could see.

rogelah wrote:My brand of muscular dystrophy is being regarded as the same as ALS which gets more publicity and research; servo-ventilation is a touted as the answer for ALS.

=SWS wrote: Servo ventilation? I was very well aware of "pressure support" ventilation (ordinary BiLevel S/T) for that application, rogelah. That's RADICAL news to me that an SV machine's scant 3 or 4 minute flow-averaging can somehow amazingly manage to cope with any sustained downward ventilatory drive or trend---such as those presented by neuromuscular disease, including ALS.

Wrong modality. I meant to say bi-level S/T. Also I wasn't clear about being lumped in with ALS. ALS is usually a relatively terminal disease; FSHD is not. As such FSHD, gets short shrift as the ugly stepsister of ALS and is seldom regarded as serious.

-SWS wrote: ALS or amyotrophic lateral sclerosis is a chronic hypoventilation disease. And servo ventilation is not suitable for ALS or anything like it. Period. No disrespect to you, rogelah. I sincerely hope you're getting the details just as confused as I would under the circumstances. If your pulmo thinks servo ventilation is in any way shape or form suitable for ALS (or an ALS-like hypoventilation syndrome) then you need a machine-knowledgeable pulmo. I really apologize for saying it so bluntly.

Wrong is wrong. No apology needed. My intentions were good; my facts were wrong.

rogelah wrote:FSHD is not usually associated with ventilation problems. Although literature is sparse there is some which promote ventilation support testing for those of us who are wheelchair bound.

-SWS wrote:Well, it has always been conventional "pressure support" ventilation by the way of BiLevel S/T. I'm still surprised to hear a doctor prescribe servo ventilation for any of that. If he prescribed the Respironics brand of servo ventilation (the BiPAP AutoSV), you could at least run the machine in traditional BiLevel S/T mode, BiLevel S mode, or CPAP mode as a fall back. But if he prescribes the Resmed brand, you can only run SV mode or CPAP mode.

I have never spoken to either of the two sleep accredited doctors on the staff. Until I do I only have comments of the RTs and my pulmonologist to go by and my interpretation filtered through the summaries and non-professional research.