Running out of time.

Here is the first study if it provides anything. https://www.dropbox.com/s/8rlxdip2hjdx2 ... t.pdf?dl=0

Thanks Michael

Geezzz...you had more centrals during the diagnostic sleep study than you did anything else....how come you came out with a diagnosis of only obstructive sleep apnea is beyond me.

1 Obstructive apnea...and 101 hyponeas
vs 203 centrals and 148 mixed
over 381 minutes Total Sleep Time

Your delayed REM isn't unexpected given what all is/was going on in the other stages. You simply kept getting woke up prior to reaching REM.

This really complicates my thoughts....they may be thinking bilevel titration because of the centrals and they may be thinking bilevel starting out with regular bilevel and moving to ASV type of bilevel. It isn't clear what or how they are going to be dealing with the centrals.

DIYing the titration process when central apnea is involved is a whole other can of worms and while it can be done by the DIY method....it isn't all that easy and not usually advised unless there simply isn't any other option.

Here's the "usual" progression of how things are done when centrals are numerous (a few is normal and not a problem but you have way more than a few).
1....they try bilevel machine...regular bilevel pressures because sometimes it will work
2...but most of the time when someone has a large number of centrals during the diagnostic sleep study they end up having to use a more specialized bilevel machine that can respond to the centrals.
Unfortunately often for insurance to pay for that high dollar specialized bilevel a person has to "fail" the other modes of therapy and in this case regular bilevel.

Bear in mind there are regular bilevel machines that are really nothing more than a cpap or apap machine with 2 separate pressures (one for inhale and one for exhale) and they only treat obstructive sleep apnea.
Then there are the high dollar bilevel machines that have a special function to treat the centrals as well as the obstructive apneas.

Central apnea...that's where there is no air moving in the airway but the airway is open...hold your breath for 10 seconds...that's what a central is like...no air is moving but your airway is open.
Obstructive apnea...that's where no air is moving but it's not moving because the airway tissues have sort of either completely or partially collapsed and are blocking the airway...so there is a physical blockage in the airway preventing the air from moving. You may try to breathe but can't move much air because of the tissues blocking the airway.

Traditional cpap/apap/bilevel machines that work for treating only obstructive sleep apnea work by delivering a more or less constant amount of pressure to the airway to hold it open to prevent the tissues from collapsing and blocking the airway. Even the auto adjusting pressure modes of these machines still work by holding the airway open.

When you have a central apnea you simply quit breathing for whatever reason and the amount of pressure from the traditional modes of therapy aren't enough to jump start your respiratory system so that the body does the inhale/exhale function and those machines can't respond with enough pressure quickly enough to do what is needed. What is needed is what we call Non Invasive ventilation where the machine essentially forces you to breathe or breathes for you. It does this by giving you a rapid increase in pressure that is quite high and delivered within seconds as opposed to traditional machines which might increase the pressure but they can't do it nearly quickly enough or go high enough to breathe for you.

The high dollar ASV type of bilevel machines will do both....hold your airway open with constant pressure for obstructive stuff but can also detect and respond to central apneas with a big fast burst of pressure....and that may be the type of machine that you need.
While there is always the chance that a regular bilevel will do the job...most often ASV is what is ultimately needed.

So that brings us back to why did you "fail" the titration sleep study? Was it the centrals or some other reason?
They didn't make that clear in the report you posted.
I hate to tell you to "just go buy a regular bilevel machine and DIY it" when you may end up needing that high dollar bilevel machine because of centrals.
Those centrals really complicate things in terms of making it easy for you to do all this yourself.
While it can be done...it isn't so easy...to do it yourself on your own and I don't recommend it for anyone unless there absolutely is no other option when centrals are present in the diagnostic sleep study or they pop up in substantial numbers as a result of cpap pressure. Your situation is much more complicated than plain jane run of the mill obstructive sleep apnea.

Anyway to find out what the bilevel titration study was supposed to address and were they going to start with regular bilevel and move to ASV bilevel if needed?

Hornnumb2 wrote:Well just heard from doctor that my cpap study was a fail and they want me to do another study with a bipap machine. I am already out $1500 for the 2 earlier studies and really don't have no money left to do this. I am at a lost of what to do.

I would certainly tell the doctor that he has done two studies and you are out of money.

You have several issues at play here. I am going to give you my opinion. But first I want to comment about a few things I read in the posts.

1. We as physicians, do not collude with insurance companies. I can barely get the insurance companies on the phone, it takes me hours of my time daily trying to get through to just a desk jockey to do prior authorizations from medications to testing etc. If we can't even get to the desk jockey that quickly, I can assure you the heads of these companies aren't taking us out so we can figure out how to screw everyone out of their money.

2. When I look at you who read your study, it is Dr. Swick. Dr. Swick is one of the most experienced sleep doctors in the country, he is well respected in sleep medicine, and he is well known. So I would just start off with the fact that an expert who actually practices sleep medicine read your study rather than some random doc just trying to make an extra buck. It does seem that you aren't seeing Dr. Swick in consultation. Rather you only are having your report read by him. While you might think there is no difference, there is a big difference between me reading a study sent by another physician, and reading a study that I refer to the lab myself. Why? Because I know the patient and I know what I would do in certain situations, but when it is a "direct referral" then we typically operate via standard sleep guidelines as the referring physician may have their own thoughts on how they want to proceed with your treatment. Also, I would most certainly trust the expert opinion of Dr. Swick over the opinion of anyone on an online forum (while I think this is a great place to get information, deciding to purchase machines with cash and experiment with your health while potentially not having the ability to look at your ahi information or flow data is probably not the best way to manage your health)

3. When I look at your diagnostic study, it does appear that you have a mixture of both central and obstructive events. That being said, and given that you were a direct referral to the lab, the AASM has guidelines regarding the treatment of central apnea.

http://www.aasmnet.org/resources/practi ... rs/csa.pdf

If you read through, you will see that CPAP is indicated for treatment of CSA. IF CPAP fails to optimize your sleep apnea, then Bilevel is an option. ASV is also an option, but you do have to be careful given the new field safety notice by ResMed when considering the use of ASV in patients with Central Apnea.

4. While I understand that you are frustrated that you are having to do so many tests, realize that you are a bit more complicated than the typical "bread and butter" sleep apnea case. Your initial study showed a degree of central sleep apnea/complex sleep apnea which always complicates the clinical picture. Sometimes CPAP is good enough to address this, but in your case it did not. I disagree with the statement that you did well at a pressure of 12 of CPAP, given that you were only asleep for 3 minutes at that pressure ant the previous pressure did not show optimal control of your sleep apnea either. While it is frustrating, and I understand it is costing money to do additional testing, you also want to be sure that you are given the correct treatment for the correct diagnosis and not rush things, this is your health after all.

Good Luck!

OKCSleepDoc wrote:1. We as physicians, do not collude with insurance companies. ... I can assure you the heads of these companies aren't taking us out so we can figure out how to screw everyone out of their money.

I am glad you said that. That is a constantly recurring theme in this forum.

I have yet to understand whether this forum attracts conspiracy theorists, or this is just some lazy thinking and flippant posting.

I have had many doctors in my long life, and a couple of them made some mistakes - one surgery was redone three times, and in another case a dermatologist made a misdiagnosis. But, I never felt like a doctor was only concerned with getting my money.

Well with the new year I am back to a $1500 deductible, from what I have paid already is $750 for each study and that was after I had meet my deductible on other test. So out of pocket would be $1500 and $750 for the third one and $750 for the 4th. Lots of money I do not have. As I see it I have 2 options. I can go to my doctor(neurologist) who requested the study or make an appointment with the sleep Doctor (Todd Swift) for a prescription for ASV that I would just have to pay out of pocket. Any thoughts? Thanks Michael

If you are ready to purchase a machine I can offer this one it is an ASV no script necessary :

http://sfbay.craigslist.org/eby/hab/5376781629.html

Paypal and 2 day shipping USPS

also have some new and used Masks

Would the Dr Swift be available to help you with the ASV home titration assuming he would be willing to write the RX and you don't have any potentially complicating factors like congestive heart failure?

Please be aware of the fact that patients with or below certain cardiac ejection rates (I forget the exact rate but 45 comes to mind) have been advised to not use ASV therapy because of increased mortality rates for those people. It's usually associated with some serious congestive heart failure patients though. It is for this reason that we don't normally advised people go the ASV route totally on their own.

I would feel better if you had some direct medical supervision available in your situation should you elect to forgo the in lab titration and do the DIY thing at home.

Once you get past the plain vanilla OSA you need more help then the board can give you.

You need to go and sit down with your sleep doctor and discuss everything you learned here and your financial situation. Once you know exactly where you stand and what he recommends we can give you help in finding the best machine and masks for you and help you deal with any side effect issues that come up. But first you need to go back to the doctors.

I was thinking I would make an appointment with the sleep Doctor but he is the one that signed off on the cpap study when it should have been something else. I feel he might have a better understanding of what I need but I also feel that my doctor will do the script no problem. After the first sleep study, I complained about the money and he said he would prescribe the cpap if I didn't want to do the second study. I just not sure what to do.

Hornnumb2 wrote:I just not sure what to do.

Most medical practices can communicate with patients without an office visit - either by phone or by a HIPAA secure messaging system. I would try to get a discussion going with the sleep doc without an office visit. My sleep doc is good about this.

ChicagoGranny wrote:

OKCSleepDoc wrote:1. We as physicians, do not collude with insurance companies. ... I can assure you the heads of these companies aren't taking us out so we can figure out how to screw everyone out of their money.

I am glad you said that. That is a constantly recurring theme in this forum.

I have yet to understand whether this forum attracts conspiracy theorists, or this is just some lazy thinking and flippant posting.

I have had many doctors in my long life, and a couple of them made some mistakes - one surgery was redone three times, and in another case a dermatologist made a misdiagnosis. But, I never felt like a doctor was only concerned with getting my money.

I have to confess I've had great docs and I've had crappy docs. Just found out that my old pulmonologist was sent to prison this year for accepting bribes in exchange for test referrals. Despite that I have to say I never felt like he was only concerned with getting money. In fact, he was one of the best docs I've ever had, he was thorough in checking out every possibility to be sure he wasn't missing anything when we couldn't get my bronchitis under control and he was the only one who picked up my MS & helped me get a diagnosis. Even the best make mistakes but that doesn't make them evil.

What else causes patient frustration? (How can that even be a "thing"?)

I also saw both the diagnostic and titration studies. This individual has central and mixed apnea with virtually no OSA. I don't think a bilevel without ASV support will work. That said, I did notice a Respironics BiPAP Auto SV Advanced for sale on Craigslist for $450 in Port St. Lucie, FL, as well as the machine being sold by Grayghost 4 in the Bay Area, CA for $750. I think either of those options would be cheaper than going through insurance, considering the %1500 deductible and 25% copay. Here are some links:

Edited to remove bogus deals...see Palerider's post next, this one is still good.

http://sfbay.craigslist.org/eby/hab/5376781629.html

Sleeprider wrote:I also saw both the diagnostic and titration studies. This individual has central and mixed apnea with virtually no OSA. I don't think a bilevel without ASV support will work. That said, I did notice a Respironics BiPAP Auto SV Advanced for sale on Craigslist for $450 in Port St. Lucie, FL, as well as the machine being sold by Grayghost 4 in the Bay Area, CA for $750. I think either of those options would be cheaper than going through insurance, considering the %1500 deductible and 25% copay. Here are some links:

http://treasure.craigslist.org/hab/5370909979.html

http://sfbay.craigslist.org/eby/hab/5376781629.html

the machine pictured in the first link (treasure...) isn't a 960, 960s have two buttons on them, compare to the one in the second listing.

actually, squinting, you can read what it is, it's a 560, not a 960. so, a bit overpriced on the secondary market.