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Allessio77
Unread post  Post subject: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 10:22 am
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I had a in lab sleep study and then a titration study and am about to see the sleep doc for the first time. I would like some advice on this 1st visit based on the results below:

Sleep Efficiency 78%
REM Sleep 9.7%
Apnea Events 12/hr
Hypopnea Events 18/hr
AHI 30/hr
0 Obstructive Events, 73 Central Apneas, 0 mixed, 111 hypopneas
0 RERA
Cheyne Stockes was observed
158 desaturations
Lowest SaO2 78%
Average SaO2 89%
219 Arousals: 78 Respiratory, 69 Leg, 67 spontaneous, 5 snore
PLMS Index 36/hr


"Severe Obstructive and Central Apnea with episodes of Cheyne Stokes and hypoxemia in the absence of respiratory events"
"Decreases in O2 saturation not fully explained by sleep apnea alone. These may not correct with sleep apnea therapy and nocturnal supplemental O2 may be needed"


What questions should i ask?
What kind of equipment should I look forward to (or request)?


My BMI is 27.7, and am a 69 years old male.
Medicare patient.

I look forward to the information of the wise users of this forum! :)


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Pugsy
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 10:41 am

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Was the above report from your initial diagnostic sleep study without cpap?

If so, you are very likely going to need a machine that will be able to deal with the central apneas (since that is your primary apnea category) as well as the obstructive stuff (the OAs and hyponeas).

I don't foresee plain jane run of the mill cpap or apap machine in your future.

Do you have any history of cardiac issues like congestive heart failure?
Take any medications that might suppress respiration (like heavy duty pain meds of some sort)?

You aren't going to be a typical OSA patient. You have both centrals and obstructives and not a small number of centrals a that. Not a big deal though...just means you are going to need a different type of machine that can specifically breathe for you when the centrals happen.


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 10:54 am
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Report data was w/o cpap.

I do not have any cardiac diagnosis, but due to my age, I do have a stage one LV Diastolic Dysfunction. No meds for that, although I take a Statin.

Are we looking at a BPAP or something else?
Will Medicare take care of what I need?

Thanks for such a quick response.


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Pugsy
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 11:36 am

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Yes, some form of Bilevel (BiPap is Respironics trademark name but is often used generically) but not sure which one.
With the Cheyne Stokes Respiration being present they may want additional heart studies beyond what you may or may not have already had.

Usually the ASV Adapto Servo Ventilation machine would likely be first choice but depending on the heart status they might opt for a traditional bilevel with a back up rate.

https://www.resmed.com/us/en/consumer/p ... 0-asv.html
This one is more automatic and will adjust to you as needed for both the obstructive stuff and the centrals. It would be my first choice of a machine if my report was looking like yours if my heart was basically healthy. Back up rate is set automatically depending on your respiration.
More of a plug and play type of machine.

or this one.. Think of it as a fixed bilevel but with back up rate that can be set manually. It does NOT auto adjust anything.
https://www.resmed.com/us/en/consumer/p ... 10-st.html

There was a big hooplah a while back about ASV and people with CHF where the heart ejection rate was less than 45...so that's why I asked about CHF issues. I personally think it was a flawed study but it scared the bejeezus out of some people so now they don't recommend ASV when people are having serious CHF issues. Instead they usually go with the fixed bilevel with back up rate.

And yes, Medicare will cover it. If you have a supplement then the co pay will likely be picked up by the supplement.
Either one is more pricey than regular cpap and Medicare has a few more hoops to jump over to qualify for it but I don't see a problem based on the sleep study results. It's pretty cut and dry there. The doctor just has to furnish additional information to prove need for the high dollar machine.

Medicare will typically do the 13 month rent to own thing so even if you don't have a supplement your out of pocket costs are spread out over 13 months.
Oh...don't let the big price tags scare you for retail MSRP...Medicare doesn't approve near that much and your co pay is based on whatever Medicare approves. Just make darn sure that whomever you get your machine from is a participating Medicare provider and they won't/can't try to bill you for the difference between what they initially bill out and what Medicare finally approves.

There are actually several different models of bilevel machines...some are nothing more than glorified cpap/apap machines but some are specialty machines that do more functions. I don't see a regular bipap taking care of your centrals. Now if the centrals popped up only during the titration study...yeah, maybe but not if you had centrals in this number during the diagnostic sleep study.

Respironics has similar models offered...I just happened to have the ResMed links handy but I strongly suggest that you get ResMed if you can.
SleepyHead software will work with the ResMed ASV and ST models but not with the Respironics DreamStation ASV higher end models.
You would be stuck with using Respironics software (if you wanted to monitor your therapy with software) which is Encore Pro and it's a real PITA to install and use. High install failure rate and just in general a difficult software to manage.


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 12:51 pm
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thanks so much for the specific recommendations!!

One question...what is a "back up rate"


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Pugsy
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 1:56 pm

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Backup rate where the machine will push air at you whether you are actually inhaling or not. It forces you to breathe.
If you don't breathe it will pretty much force the air. Acts like a ventilator.

Example...if it was set to 10 that would mean 10 breaths to a minute.
or every 6 seconds. If you went 8 seconds without breathing the machine would push an inhale on you.

Regular bilevel/cpap/apap machines will wait for you to initiate the breath and that's not good when you aren't breathing enough on your own and when you have a central apnea the airway is open but you aren't breathing. So central apneas are the brain just not telling the body to inhale as opposed to obstructive apneas where the body is trying to inhale but can't move air because of the airway being obstructed.


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 2:25 pm
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This all is vitally important info for me to know going into the docs. You are performing a valuable service for the members of this forum. Thanks.

I am hoping the CSA doesn't harm me while I wait for the equipment!


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Pugsy
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 2:46 pm

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Well in reality you have probably had this issue for quite some time only now you know about it.
Hopefully they will put you on the fast track for equipment and not drag their feet.

You may even need another titration sleep study with whatever machine the doctor thinks is best suited for your situation.

Do you have a copy of the results of the titration sleep study you have already had?


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Thu Nov 02, 2017 3:43 pm
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The titration study was just done a week ago, and is not yet available. Presumably it will be at the docs when I go for my appointment.

I will post it on this thread when I get a copy.


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Sun Nov 05, 2017 11:03 am
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I have noticed on my sleep report (see above) that all my Central apneas are in a continuous 1.5 hour period late into the study while on my right side sleeping.
Does anyone see any significance in this?


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diamaunt
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Sun Nov 05, 2017 12:22 pm
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It's something that happens to some people, but last time I heard, nobody's really figured out why.

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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Tue Nov 07, 2017 1:49 pm
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Got word that my doc's appointment had to be rescheduled for 11/22. I am so concerned because my fatigue is growing and my headaches are increasing! But I will post when I get to see the physician!


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Mon Nov 13, 2017 9:02 am
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While I am waiting for my formal diagnosis in 10 days, I have been reading on this forum and elsewhere that even if your diagnosis is CSA, and the best therapy is an ASV machine, Medicare may require that you give a regular CPAP a try. Can this be true since the cause of the apnea is fundamentally different? Can a CPAP or APAP help at all?

If so, what are my options if I don't want to live with a machine that may make no difference (and may actually be harmful)? Can the doctor supersede Medicare rules (IF Medicare has such a rule)? Can I get around this situation, if it exists? Suggestions?

(Should I try to find a used ASV somewhere?)

I am so exhausted and tired all day, have mild headaches all the time, the anxiety is getting to me, and have been living like this for almost one year and I NEED TO GET THE RIGHT EQUIPMENT FOR THE ACTUAL DIAGNOSIS!


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Pugsy
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Mon Nov 13, 2017 10:59 am

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If the documentation is there in the diagnostic sleep study to justify a different form of therapy (beyond cpap/apap) for a person with central apnea issues Medicare may not require cpap failure to move up to a machine designed to deal with centrals. I have known people to go directly to ASV when centrals are the primary problem.

It would be really interesting to see what the results were from the titration sleep study that you had and what did they find or use.


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Mon Nov 13, 2017 11:40 am
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I will post the results asap. I am expecting them in the mail in the next couple of days. I don't see the doc until next Wednesday 11/22.

Do you think based on my initial results (above) that in the titration study they titrated for an AVS since the study only showed central apneas and no obstructive?


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Pugsy
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Mon Nov 13, 2017 11:45 am

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I have no idea what they titrated for or with.
Common sense would say it should have been ASV titration if there are no obstructive apneas because cpap/apap won't do much for centrals but I have no idea if they used common sense or not.
It all depends on what the doctor told them to do and unfortunately not all doctors come with a goodly amount of common sense.
They (the sleep lab) would have to have done what the doctor told them to do and the doctor may or may not have left the door open for them to go to ASV.


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Mon Nov 13, 2017 3:09 pm
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Just received results of titration study:

Sleep Efficiency 49%
REM Sleep 5.4%
Apnea Events 13/hr
Hypopnea Events 13/hr
AHI 26/hr
0 Obstructive Events, 45 Central Apneas, 0 mixed, 43 hypopneas
0 RERA
Cheyne Stockes was NOT observed
86 desaturations
Lowest SaO2 87%
Average SaO2 92%
152 Arousals: 53 Respiratory, 26 Leg, 70 spontaneous, 3 snore
PLMS Index 3.8/hr

It took me over an hour to get to sleep in this study, and I only slept half the time. (Efficiency in first study was better at 78%)

Looks like the Interpreting Physician in this study is recommending a Auto CPAP with setting of 5-15 cmw Why an auto CPAP when I have Zero Apneas??
There was again (like in the first study) a concentration of my CSA's at the end of the night and correlated with the BiPAP portion of the titration. Doc associated the CSA with the BiPap pressures.

So now I have two studies...what issues should I be prepared to discuss with the Sleep Doctor next week??


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Pugsy
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Mon Nov 13, 2017 3:18 pm

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Sometimes Bilevel pressures do trigger centrals BUT you had a large number of centrals only with NO cpap/bipap pressures at all.
So it's kinda hard to blame the centrals on bipap since you had them with no pap.

I would be asking the doctor just how worrisome those centrals were to start with and what does he plan to do to try to fix them if they need fixing. Does he want to try cpap/apap in hopes you get lucky and it works or what will he do if you don't get lucky???


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Allessio77
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Mon Nov 13, 2017 4:23 pm
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I don't think those centrals were associated with the BiPap either since I had even more of them without any PAP!

Am I reading you right, that you are skeptical that a APAP will be the right therapy in this case? Both studies indicated ZERO Apneas..I assume this means obstructive apneas.

Also, I am concerned with all the leg movement that I was unaware of...does this have anything to do with the AHI? Do they cause either a hypopnia or a central?

Also my REM at 5 % is a little troubling. Does PAP therapy alter that?

Thanks for concern for my case. I really want to treat the problem correctly because this tiredness sucks.


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Pugsy
Unread post  Post subject: Re: Studies Completed...Now the Doc  |  Posted: Mon Nov 13, 2017 4:46 pm

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I don't understand the ramifications of potential limb movement issues and apnea...sorry.
Maybe Jason has some thoughts on that one.

You didn't get much REM but it wasn't because of pap therapy. Most likely you just had poor sleep quality and didn't move through the necessary sleep stages for whatever reason.
Proper pap therapy enables a person to move through the sleep stages and get the needed amount in each stage including REM.


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