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Newbe with Complex Apnea - Best ASV to get?
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Ugly Offline

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Post: #11
RE: Newbe with Complex Apnea
(03-20-2013 08:05 AM)racprops Wrote:  Here is the situation:
During my recovery and stay in the Hospitable I was informed I also have sleep apnea ,

Rarely do I find a stay in the hospital to be hospitable.
Cute. Really cute.

Quote:So I did a home study and the results were so bad the Dentist sent me to a sleep Doctor:

Who said as I had surgery a dental device would not help me. That I will need a CPAP system.

There is talk now and then - the dental devices don't help everybody so you're not alone there.

Quote:I am currently about 4 weeks before I can begin treating what seems to be the root cause of my health problems.

Aw, man, that bites. Everyone here knows, the sooner the better.

Quote:All these costs are out of pocket above my surgery bills and without this treatment I stand no real chance of any real recovery.

I can't relate. I really can't relate. What barbaric planet did you say you are from? Around here, most surgery that a doctor deems is necessary is paid for by health insurance guaranteed to everyone (surgery regarded as "cosmetic" one still has to pay for.)

Quote:IS there a very friendly Doctor in Phoenix AZ someone can recommend me to for a second opion?

OR a much lower cost to test and set up a ASV -PAP system?

Unfortunately those machines are not cheap. I would love to say something like get a used machine but it's not often someone is "cured" of sleep apnea so most of the used machines are -- still being used or the person using it is dead. I don't know how many toes you have to step on.

I wanted an AutoSet. My DME said that I'd need a prescription first.
When I got one she still hemmed and hawed about the whole thing, making more excuses. So I called ResMed directly and they said they'd have no problem trading in my "brick" for an AutoSet. I'm still awaiting it but hopefully things will fall in place next week.

What I'm trying to say is sometimes you have to bug a whole lot of people before you get what you want. They don't make it easy.
03-20-2013 02:14 PM
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racprops Offline

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Post: #12
RE: Newbe with Complex Apnea
When your self employed in The Good Old USA you either pay though the nose for Health Insurance or take your chances.

Over all I think even at the end of all of this I will come out in the plus figures VS say 40 years of paying premiums...
especially when I have total control as to which Doctor and what treatment I WANT and what machine I want...
03-20-2013 03:18 PM
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racprops Offline

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Post: #13
RE: Newbe with Complex Apnea
Well the $64,000.00 question is:

IS a full night study needed to set up the ASV-Pap machine to tread CPAP induced complex apnea/central apnea?

Rich
03-20-2013 05:03 PM
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SuperSleeper Offline

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Post: #14
RE: Newbe with Complex Apnea
(03-20-2013 05:03 PM)racprops Wrote:  Well the $64,000.00 question is:

IS a full night study needed to set up the ASV-Pap machine to tread CPAP induced complex apnea/central apnea?

The first question is: do you even need an ASV for sure? And why weren't they able to determine that from the first sleep study?

Then, if it's determined that you need an ASV, the question is do you need a second night at the lab to setup the ASV? My gut feeling is no on that, but I'd like to hear from more of our experienced folks here in the forum this evening.

Thinking-about

SuperSleeper
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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.

03-20-2013 05:33 PM
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racprops Offline

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Post: #15
RE: Newbe with Complex Apnea
(03-20-2013 05:33 PM)SuperSleeper Wrote:  
(03-20-2013 05:03 PM)racprops Wrote:  Well the $64,000.00 question is:

IS a full night study needed to set up the ASV-Pap machine to tread CPAP induced complex apnea/central apnea?

The first question is: do you even need an ASV for sure? And why weren't they able to determine that from the first sleep study?

Then, if it's determined that you need an ASV, the question is do you need a second night at the lab to setup the ASV? My gut feeling is no on that, but I'd like to hear from more of our experienced folks here in the forum this evening.

Thinking-about

Well we went in with a split study to begin with. The first 1/2 was to record any apnea and the second was to try CPAP, which failed and caused the complex Apnea.

The tech said he tried to do a Bi-level but there was not enough time to get a reading.

Now from what I have read here and on other sites it seems very unlikely I
will respond to a Bi-Level. But he is planing on trying it first.

I am 90% sure it will fail and that I will be much better off with ASV, and as the Bi-Level and ASV cost just about the same... the cost of the machine is not a factor.

He does insist on a full night to correctly set up the ASV.

I too want to see what the folks have to say.

Thanks.

Rich
03-20-2013 05:50 PM
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SuperSleeper Offline

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Post: #16
RE: Newbe with Complex Apnea
Hi Rich, I'm pretty sure that a second full night experimenting with ASV settings to optimize the treatment will be beneficial, but what I'm not so sure of is if you could simply do that yourself using an ASV and associated software to monitor your own data as you make adjustments over the course of several days, especially if your ASV auto-adjusts as you go. If you get a ResMed product, you should be able to use the ResScan software to see your results so you can properly set all the various ASV parameters such as EEP, Min/Max PS, etc. (all those terms and settings are found in the clinician manual, available here).

You could also utilize the ResScan Interpretation Guide to help you with some of the terms and settings, etc, (that's found HERE).

In other words, given the tools now available to patients, used alongside an auto-titrating ASV machine and ResScan software, I'm not convinced that you couldn't do the setup yourself to save money. HERE is the ResScan Device Compatibility Guide (PDF), which will tell you what ResMed devices will work with the ResScan software.

But, I'm hoping to hear from others on this...

SuperSleeper
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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.

03-20-2013 06:18 PM
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racprops Offline

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Post: #17
RE: Newbe with Complex Apnea
That is the kind of thing I was hoping to find out.

Thanks 10,000 times supersleeper.

I too feel even if he does the full night setup it will need readjusting as I get use to it.

BUT he will not prescribe for it and so far all the sales sites require a prescription to sell one to me.

So we need a friendly Doctor to help.

I can scan in the two page report I received and email it to such a Doctor.

Rich
03-20-2013 06:43 PM
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PaulaO2 Offline
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Post: #18
RE: Newbe with Complex Apnea
The main question is, if you have PAP induced central events and do not have them when the PAP is off, then an ASV probably, maybe, is not needed.

PAP induced central events are common (although they have yet to duplicate this in a study). The vast majority of us acclimatize to the pressure and the central events go away or at least drop down in number. There are those, however, who do not and they require an ASV unit. One member here, Zimlich, had that situation.

A Bilevel PAP is not for treating central sleep apnea. A normal xPAP drops the pressure on exhale by 1 to 3 points. A bilevel drops the pressure by more than 3. These are designed for those who have lung issues or other problems that prevent them from breathing out against the pressure.

What I would do, if I were you, and keep in mind I am not you and probably have different priorities because I am me, I would go to a supplier and ask how much it would cost to lease an autoPAP for two weeks or longer. If the price is reasonable, then I'd go to my regular doc and get a prescription for a trial with an autoPAP for two weeks or more. Any doc can write the script. I'd rent the autoPAP and use it. While I was at the supplier, I'd also pick up an oximeter (or buy one online while I wait). Using the data from the split sleep study, I'd set the pressure range accordingly, if I can. Perhaps the DME could help me. Anyway, I'd use it one night and then look at the data. Did I have central events? How many? For how long did each last? I would then use it for no less than 10 days, looking at the data each day.

IF the data shows I have central events that are not decreasing with time and maybe actually increasing, then I'd assume I have complex sleep apnea and need an ASV. If they seem to be slowly dropping, I'd continue with the experiment.

This is essentially what the sleep doc wants to do but he wants to do it in a lab (where it is safe and records a ton more data) but only do it for one night. I'd be doing it for several nights, in my own environment where I feel comfortable.

Just keep in mind, that's what I would do based on what you have told me. Just because I jump off a bridge, does not mean it is a good idea. Wink

PaulaO2
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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.
03-20-2013 06:46 PM
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SuperSleeper Offline

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Post: #19
RE: Newbe with Complex Apnea
FYI, since you don't have insurance, you don't need a sleep doctor to prescribe CPAP, APAP, Bi-Level or ASV... all you need is any type of doctor (family physician or any doctor allowed to issue prescriptions). (EDIT: oops, I see Paula was posting that same thing above as I was writing) Smile

So, if you have a more 'reasonable' doctor friend, simply ask them to write the script for you. That doc would have to write something on the prescription like "ASV in auto mode" alongside associated settings unique to whatever brand of ASV machine you want. If you have a DME supplier in mind, simply ask them what needs to be written on the prescription to make sure it goes smoothly.

SuperSleeper
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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.

03-20-2013 06:51 PM
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Shastzi Offline

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Post: #20
RE: Newbe with Complex Apnea
Hmmm. The first study should have enough evidence to support the diagnosis of complex apnea.
As far as I know the only machine that can treat that is an ASV. Any MD's out there feel free to correct me if I am wrong.

The deal with "lets call the patient in and hook up as many different kinds to machines as we can as many times as we can!" is BOGUS.

I smell a whole pack of rats and they only want to siphon the patient's wallet (racprops) before letting him go out the door.

It's time to break out the hot pine tar and light some torches.

In summary, I'm with SuperSleeper. Do what you can to start getting the therapy going. It usually takes a while to get used to, so sooner is better.

Lotsa Luck & hang in there!

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
03-20-2013 08:57 PM
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