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ASV News Dated 5/15/17
#11
I have seen a number of individuals that presented on the forum with clear complex apnea, that optimized results on CPAP to very low AHI. In some of those cases CPAP seems to provide a stable and satisfying therapy, while others like SpyCar still felt their lives slipping by in spite of good numbers. Others have what I have called a "fragile" efficacy where results are inconsistent and the slightest change would cause more events. The bottom line for sleep "science" is that it is mostly a matter of people that have sleep disordered breathing being treated by a trial and error process that almost always begins with CPAP, and only evolves to higher levels of treatment if proven medically necessary.

Criticism of the forum (my) advocacy of ASV is not unwarranted. We see a lot of people join this particular forum with significant problems that are not being addressed by their doctors and technicians. Complex and central apena being treated with bilevel with large pressure supports and no backup rate has a predictable failure rate. Part of the frustration and skepticism of the sleep "profession", arises from the fact we have seen individuals who had 100% central apnea and hypopnea in their sleep tests, come in here with a CPAP and diagnosis of obstructive sleep apnea. Many others have complex apnea syndrome, and I don't think we "push" ASV, but make them aware that it might be their ultimate best option; however we invariably start working to optimize their results with the equipment they have been issued. Normally this means lowering pressure, working with fixed pressure and eliminating EPR and Flex. The probability of success is not in favor of CPAP working in the long-run with these cases. Experience and time has shown me there are enough exceptions, where good results are obtained on CPAP, that I have personally become less strident in advocating ASV until we have at least tried the best CPAP approach. Most of all, we empower members with knowledge of what is going on, and suggestions on how to make things better and more comfortable. We tell them how to negotiate an apathetic medical bureaucracy that is stacked against them. I think we hold out hope for those that would otherwise write off CPAP as an uncomfortable, ineffective failure.

How can so many people be so poorly treated, not only for complex and central apnea, but for simple obstructive apnea as well? There are many fine doctors and technicians, but there are also too many that have no respect for their patients, ignore their actual symptoms, and accept therapy results that still disrupt their lives and health. I can't imagine that so many doctors could be as disinterested in their patient's outcome as what appears to be the case from the stories we hear on the forum. Little wonder nearly 50% of CPAP patients quit when they are misdiagnosed, given crappy equipment, improperly set to resolve their conditions and told to go home and use the equipment and lose weight. If you have any questions talk to the DME. What a mess!
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#12
(12-16-2017, 10:04 AM)Walla Walla Wrote: Shin Ryoku, I don't think anyone is pushing for ASV unless it's called for.


I guess we just disagree.  I'm not specifically talking about this thread.  I've noticed what looks to me like fairly hard pushing of ASV where isn't necessarily the best solution along with flawed assumptions about CPAP and doctors who prescribe it for CSA in more than a few threads.  

Either way, I'm not going to keep bringing it up when I see it.  Every forum has it's own character.  I've said my piece.  Probably too much already.


EDIT: Looks like Sleeprider posted while I was typing. I understand where you and others are coming from. From my perspective, when you tell someone who may do well with CPAP that they are probably gonna need "a higher level of treatment" called ASV in the end, that is a form of pushing ASV.

It's human nature for the recipient of that information to want the higher level of treatment and to start second guessing why a doc is prescribing the less likely to work level of treatment. Coupled with some loose talk about ignorant or uncaring docs who want to save money plus the suggestion that concerns about ASV safety are only applicable to people with a rare heart condition that are about to die anyway, I think it can undermine care.
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#13
(12-16-2017, 11:08 AM)Shin Ryoku Wrote:
(12-16-2017, 10:04 AM)Walla Walla Wrote: Shin Ryoku, I don't think anyone is pushing for ASV unless it's called for.


I guess we just disagree.  I'm not specifically talking about this thread.  I've noticed what looks to me like fairly hard pushing of ASV where isn't necessarily the best solution along with flawed assumptions about CPAP and doctors who prescribe it for CSA in more than a few threads.  

Either way, I'm not going to keep bringing it up when I see it.  Every forum has it's own character.  I've said my piece.  Probably too much already.

I hope you keep bringing it up.  It is part of the balance of information on a forum.  We can get ahead of ourselves and advocate a higher level of treatment before proving the current approach cannot succeed.  I've been guilty of it, and I value differing or opposing opinions.  It's okay to slow things down.  It is fair to criticize advocacy of ASV before its time, but part of the education process will involve a discussion that the technology is out there, and might be appropriate if CPAP does not result in improvement.
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#14
I don't think one machine is pushed over the other, I view it as treatment not machine.  Also, I think a lot of it is insurance driven, not physician. 

For me, I couldn't understand why I had apnea, I didn't think that I fit the 'mold' which recently discussed may not really be the true 'mold'.

http://www.apneaboard.com/forums/Thread-...re-kick-in

I think it is well documented how CPAP can cause central apnea but if you already have central apnea diagnosis from a documented sleep study (without a CPAP machine), then I'm not convinced that the patient should have to endure months of poor treatment strategy just to satisfy insurance regulators.  Look at the darn data, if you have 45-55 seconds of apnea with a clear airway, documented from sleep study where there were NO muscle movement to breathe, then skip all the CPAP, BiPAP, and all the extra sleep studies and go straight to ASV.

I know that there is concerns over ASV with low EF but look at CPAP, it too can reduced ventricular filling pressures and cause an increase in cardiac work.

http://www.derangedphysiology.com/main/c...physiology

But before throwing ASV under the bus, what I think is a big plus for it is the reduction in pressure at the end of inpiration, rather than keeping the pressure at an elevated level (assuming the patient doesn't need a high pressure).

Back to me; my sleep study said I had obstructive apnea, which I think is/was, just for insurance coding.  I did't have OA, I went back for a CPAP titration study, again I didn't have OA events, all central and still had to use CPAP.  After two months I had to try different pressures to show insurance we are trying everything possible.  Then went in for BiPAP titration study where I had absolutely no OA events, 30+ minutes of central apnea (89 events during the study).  Why the heck would a patient have to go through all that hoopla, give the patient the correct machine from the start.  For me, it cost more money to me and insurance, to get 4 sleep studies done.
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#15
Hojo, one quick question.

If not for the information and help you got on the forum, where do you think you would be now?
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#16
(12-16-2017, 11:08 AM)Shin Ryoku Wrote: It's human nature for the recipient of that information to want the higher level of treatment and to start second guessing why a doc is prescribing the less likely to work level of treatment.  Coupled with some loose talk about ignorant or uncaring docs who want to save money plus the suggestion that concerns about ASV safety are only applicable to people with a rare heart condition that are about to die anyway, I think it can undermine care.

I would simply argue, the information of alternatives should be available and understood.  There are plenty of safeguards in the prescription process that will ensure any switch to ASV is medically necessary and takes a lot of time.

At the same time we provide information, we are suggesting changes to pressure and settings that achieve much lower AHI.  Maybe there is a reason someone has 20-30 AHI when they get here, and immediately cut that to 8-10 with fixed lower pressure?

As far as I know we invariably refer people back to the care of their doctors.  The talk becomes derisive only when it is clear the doctor does not listen, categorically rejects other treatment options, or is simply inaccessible or dismissive.  I'm not aware of ASV safety being in question to groups other than the identified cohort in SERVE-HF, but again that risk is something that is always brought up.  I try to make it clear I have no medical credential, and any change in treatment has to go through a qualified individual that can review all the health issues and make an appropriate decision.  Sometimes that happens, and sometimes it seems the doctors have no interest or expertise in looking deeper into a problem. Encouraging individuals to obtain a second opinion is certainly a big part of what we do when faced with a "brick wall".
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#17
(12-16-2017, 11:46 AM)Hojo Wrote: I know that there is concerns over ASV with low EF but look at CPAP, it too can reduced ventricular filling pressures and cause an increase in cardiac work.

IMO, there is no comparison between a primary endpoint outcome of more people dying and a physiology mechanism than can be theorized out of context to be disadvantageous in some manner.

In addition, it is incorrect to suggest that CPAP is valid as a first line therapy for treatment-emergent CSA and not for other forms of CSA including primary CSA.
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#18
(12-16-2017, 09:15 AM)Shin Ryoku Wrote: In particular, I think there are a couple misconceptions here about the safety signal from SERVE-HF:  

First, people with CHF and EF < 45% are not on death's door.  As a physician, I have many patients with EF < 45% who live for many years.  Some of them even have a return to normal EF.  

Second, since the medical / scientific community does not know what caused the increased risk of death with ASV in CHF patients with reduced EF, we don't know what that safety signal means for ASV safety in other groups besides the one with that heart condition.  There seems to be an assumption by many in this forum that it is definitely safe except for people with that heart condition, but sleep medicine experts by and large do not agree with that assumption.  


Quote:As an aside, by extension many experts also have concerns about BPAP-ST safety - especially in patients with CHF and reduced EF - since it has in common with ASV the use of bilevel PAP with backup rate.

Shin;
Enjoyed your comments on ASV.  I am in the 40-45% LVrEF class. I do not believe I have CHF as there are no fluid retention issues, but instead CHD as it was a TAD M/I requiring two stents.  I continually study whatever I can find that applies to me and accumulate data trying to somehow get prescribed ASV, as the SERVE-HF study is wrought with irregularities- giving rise to much skepticism. That, now, has become pretty much a moot point.

I was condescending toward the sleep doctor previously because it took nearly three months, after being referred, before actually getting a face to face with the doctor himself.  Most of what instigated this feeling was how really disorganized and screwed-up the office and the whole sleep-study operation was around here.

Turns out he is very knowledgeable and spent the time necessary to address my issues. Reality is he is just ‘spread too thin’ and his assistant serves as his buffer. The moniker ‘Wizard of Oz’ is still applicable though due to the difficulty it has been to gain access beyond the curtain.

It seems he does not subscribe to the SERVE-HF study even though he says some of his very knowledgeable cohorts are solidly behind the conclusions. So, the truth is still somewhere up in the air.  That probably was 'why' he prescribed the VAUTO I'm on now instead of the ST that yielded the 'best' titration result at the sleep study, to be sure the VAUTO would not succeed.
 
I found it interesting that he had said when we met that the AirCurve 10 ST could well prove to have the same negative effect on LVrEF patients (if actually any) as ASV inasmuch as both have back-up. The same as you stated in your posting.  In my meager knowledge I would think the ASV 'safer' as it apparently has an 'intelligent' mode whereas the ST is 'dumb' in it's back-up function. [please feel free to correct me anyone if this is a misstatement]  With the VAUTO I continue having mixed apneas with consistent CHI and am waiting patiently for the new prescription; AirCurve10  ST to arrive at the DMS. It appears that back-up is the only thing to ‘kick’ the CA’s available to me, and I do not know at this time if they are treatment induced or not, I’m guessing not.  I’m gonna’ be findin’ out..
 
Thanks for your ASV comments, they were interesting and thought provoking.
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#19
Not sure if this has been posted here before but here's  an interesting analysis of the SERVE-HF study. 

"In this commentary, we consider methodological issues including the use of a previous generation ASV device that constrained therapeutic settings to choices that are no longer in wide clinical use. Patient selection, data collection, and treatment adherence as well as group crossovers were not discussed in the trial as potential confounding factors. We have developed alternative reasons that could potentially explain the results and that can be explored by post hoc analysis of the SERVE-HF data. We believe that our analysis is of critical value to the field and of particular importance to clinicians treating these patients."

http://journal.chestnet.org/article/S001...0350-5/pdf
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#20
(12-16-2017, 11:17 AM)Sleeprider Wrote:
(12-16-2017, 11:08 AM)Shin Ryoku Wrote:
(12-16-2017, 10:04 AM)Walla Walla Wrote: Shin Ryoku, I don't think anyone is pushing for ASV unless it's called for.


I guess we just disagree.  I'm not specifically talking about this thread.  I've noticed what looks to me like fairly hard pushing of ASV where isn't necessarily the best solution along with flawed assumptions about CPAP and doctors who prescribe it for CSA in more than a few threads.  

Either way, I'm not going to keep bringing it up when I see it.  Every forum has it's own character.  I've said my piece.  Probably too much already.

I hope you keep bringing it up.  It is part of the balance of information on a forum.  We can get ahead of ourselves and advocate a higher level of treatment before proving the current approach cannot succeed.  I've been guilty of it, and I value differing or opposing opinions.  It's okay to slow things down.  It is fair to criticize advocacy of ASV before its time, but part of the education process will involve a discussion that the technology is out there, and might be appropriate if CPAP does not result in improvement.

Oops DAMN!
I sat down to take my time this morning writing what I perceived as an intelligent post.  Only to find after I posted it there was a Golden Shower ongoing.

I have been able to obtain very valuable help from Sleeprider in the past and it has assisted me in working my way (slowly) to an endpoint that is hopefully going to remedy my apnea problems.  Shin Ryoku has come on board and he also has produced very authoritative and thought provoking postings I found very helpful.

Both of these gentlemen are integral parts of the heart of this apnea source of information.  Everyone please put your D**k away and stop pi**ing in the air, step back and take a deep breath..   let's move forward. Bigwink

Z
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