Late yesterday the sleep clinic called and confirmed my appointment.  While talking with the lady, she collected the deductible because the technicians can only accept cash during the evening hours and have no access to the credit card machines.  This was a surprise but not a life-ending event.  What did rattle me was another comment she made indicating that at the end of the session in the morning, she said; "A technician will fit you with a machine and mask before sending you home."  When I asked her if the technician would be able to explain the report to me before we got into the machine fitting she said, "No.  Our test reports won't be available for 7-10 business days after the testing and they are then sent to the subscribing doctor."  She went on to say that if I made a special request they would also fax or mail me a copy.

Hearing this has me wondering what others have done to make a decision on the equipment after a session.  Do other clinics pack people off with hardware without knowledge, or is this an unusual process?

I can't for the life of me think of buying the toys without some understanding of what was observed and how it should be applied.  

What were your experiences in this area, and what should I be expecting for performance from the clinic?

Continuing the surprises, I asked her about the machines they had and asked if they had the ability to record information so that I could monitor what is happening at home.  Again she said, “No.  None of our machines can do recording.â€�  When she made that statement it was delivered with a surprise that anyone would want to do any checking.  

Her comment now has me wondering if I’m the only analytical person in my area.  How popular is it to have a machine that can be used to build a treatment record that be observed and used as a guide to improving treatment?



Last edited by Roger... on Sat Oct 01, 2005 5:31 pm; edited 1 time in total
_________________
Thanks,
Roger...

Roger,

The whole scenario you've just described stinks to high Heaven.
Do you have (or not have) insurance coverage?  (I'm wondering about the cash/credit card situation you described)
A doctor HAS to write a prescription for your machine.....PERIOD.  This prescription should be given to YOU.  If you do NOT have insurance coverage and are paying for the equipment out of pocket, you should be able to get it wherever you want.  On top of this, the doctor should have had to see the sleep reports BEFORE he writes the prescription.  Also, for the money you're spending, you should be able to get whatever equipment you want (within certain parameters....an exception would be a BiPAP machine).  This is YOUR therapy and YOUR LIFE.....get a machine that records detailed sleep information.  You're probably going to have it for a long time and you need to get the most advanced features available.  They're not THAT much more expensive.

Best wishes,

Den

Hello Den,
I have insurance w/ Blue Cross, but there is a deductible of $500 per person per year and this will apply to this procedure.   Because there is a deductible, the clinic would not schedule the study unless I agreed to pay them the deductible before the testing.  Paying wasn't my biggest issue, just how they went about handling it.  I guess I don't like paying before the service is to happen, but because they won't handle credit cards at the time of service I would have needed to give them cash and they didn’t tell me this until 2-days before the appointment.  Maybe they would accept a check, but they didn't say that and I didn’t ask because I don't like giving checks out given today's ID thief problems.

On the form the Dr. signed, there is a box that indicates they can provide equipment if the test results support that is the best option.  I think my Dr believes there will be a medical review of the results at the end of the study and that will be the triggering process.  However, I was told only technicians will be available and with no report, there can't be any medical review.  This is where my understanding has me dug in deep.  I would like someone at the clinic can do something more informative.  

Some of my hesitation also comes from a bad experience with my first sleep test about 7-years ago.  To this day the only thing I had ever received, or understood about that first tests was that I was marginal for needing a machine.  No paper was ever given, just a simple statement by the Dr at that time as she concluded our visit.  I think this time I want to understand more data.  

Insurance on the machine side will only cover 80% after the above deductible and that coverage is only up to a certain limit.  If the machine’s expense exceeds the insurance limit, the overage will be on my expense so I want something I’ll believe in for a while.

Hearing from others will help me calibrate my disappointment before the appointment, and so I don’t feel going this will be a waste of my time and money.  

Time will tell.

Thanks for some feedback.


_________________
Thanks,
Roger...

My sleep test last night left me thinking I wasted my time.  

It was a waste of time because the test clinic was instructed by my doctor’s prescription to perform “Polysomnography w/CPAP Titration (CPT-95811) Diagnostic w/CPAP pressure determination.â€�  Instead, they just let me lay there all night wondering what time it was during the periods when I would be awake.  In the morning when I spoke with the technician about the testing she said, “I didn’t do the CPAP because you didn’t seem to be snoring more than what normal people do, so I didn’t see how it would help you.â€�  

When I arrived at the testing center, I mentioned that I couldn’t fall asleep on my back because the moment I relax, the airway blocks and it keeps me awake.  When I’m on my side, the only time I snore is when my mouth isn’t open.  I went on to mention that in order for me to get any sleep I need to sleep on my side.  When I’m on my side my mouth opens most of the time, even if I start out with it closed.  On my side I can sleep quietly until my arm goes numb enough to wake me.  When that happens, I roll to the other side, but for the test I would try to roll onto my back to see if I can get into a sleep state.  I went on to say that if you find me not going on my back soon enough for the testing, please ask me to roll onto my back.  I hear easily when I sleep and will do my best to follow the order.

This information was given to a technician with 6-years of experience and a CPAP user of 2-years.  I was certain with this person I was in good hands, but somehow during the study I got handed off to a young lady who only had a few months experience.  That limited experience allowed her think she could ignore the prescription based upon how little noise I was making.

This is unfortunate because it adds a time delay and the additional expense of finding and hiring another testing center, not to mention extending the problem.  

In writing this note I’m frustrated and wonder if they will call in 2-weeks when their report is ready telling me the testing was inconclusive and I need to come back do another test with them and authorize another billing.  

I’m certainly wondering why this sleep testing doesn’t have better standards of performance.


_________________
Thanks,
Roger...

I just my sleep study a week ago.  My experience was very different.  I had a very informed staff anf felt very comfortable.  It sounds to me that the problem isn't with the sleep study itself but with the center that provided it.  I know in the area I live, they do them at a couple of different clinics and they even set them up in hotel rooms to make people feel more comfortable.  The only reason I can think of them wanting to fit you for a mask before you left is to be able to get you the right sized mask if you needed to be put on CPAP.  Sorry about your bad experience, but don't give up yet.

Hi Roger!
There may be explanations for a couple things here.
Following a CPAP titration, there are often problems getting the patients set up on their equipment, and days or weeks can go by before they get started on their therapy.  In order to remedy this, some labs set their patients up the day after their CPAP titration so as not to lose any time.  They should have a fairly good idea of what the setting should be, and adjustments can be made after the physician reviews the data.  Not a bad idea.
In doing a Split-Study (both the diagnostic and CPAP titration in the same night) the technician should have specific criteria on when to begin the CPAP titration, based on meeting a particular AHI and/or oxygen desaturation.  If these targets are not met, the CPAP titration is not done.
Anyway, that's the way it should happen.  Clearly, any explanations that were given you were poor.  And, yes, you should have a heckuva lot more say in your equipment selection.
Still, wait for the report and let's take a look, then take it from there, too early to guess what happened at this point.
Check back.
sleepydave

Roger,

Check out the link below.  I'm not recommending you go the route I took, but it has  worked for me for two years.  Autopap and software.  By the time you figure in deductible, co-pays, etc. you might decide you'd rather take control of your own treatment and educate yourself via message boards like this one, cpaptalk.com, and talkaboutsleep.com.  Choose what you want and buy the equipment online out of pocket yourself.

Jan 25, 2005   Subject: not diagnosed yet, many ? brand new here

The only thing I'd revise in what I wrote in that post is the machine.  I'd get the Puritan Bennett Goodknight 420E autopap with heated humidifier and Silverlining software.  I had that great little machine to begin with, then the Remstar Auto (one without C-Flex, and later one with C-Flex.)   I've also used the ResMed Spirit Auto.  I didn't use so many machines because of any problem with one or another....just wanted to try different ones for the heck of it.  The 420E auto and the Silverlining software remain my favorite.

If you get a copy of your prescription and it has the word "CPAP" on it somewhere, you can order an "AUTOPAP" from most online cpap supply stores.  The Rx doesn't even have to say "autopap" since an autopap is a type of "cpap"...an "auto-titrating CPAP".  You don't have to have a prescription at all to order masks, humidifiers, software, etc. online.  The machine is the only thing that most online stores require a prescription for.  The word "cpap" on the Rx is all it takes to buy an autopap online.  It doesn't matter whether a pressure, or pressure range, is specified or not.  Autopaps come preset from the manufacturer, so your prescribed pressure will fall within the preset range of 4-20 anyway.  After you get the machine, it's a good idea to set it for a narrow range around your prescribed single pressure.

Example, if the pressure the doctor prescribes for you is "12", you might want to initially set the autopap for a range of 10 - 14.    Use the software to look at your overnight data on your own computer.

One of the many good things about getting an autopap is this -- if you find that a single pressure works better for you than any "range" at all, the autopap can be operated in "cpap" mode.  Two machines in one.

Hello Sleepydave,
Your name tells a story.
 
Thanks for the input.  It certainly adds a perspective that takes some of the frustration out of the experience and for that I am grateful.
 
With that said, I think I should share the details of my experience more clearly now that I'm not as disappointed.  To do that, here is the message that I sent to my doctor so we could make the next decision.  If after reading this, you would comment, I would really appreciate your perspective.
 
Note to my doctor - people names removed for their protection:

Quote:

<heading & address removed>
 
Re: Polysomnography w/CPAP Titration
 
Dear Dr. xxxxx,
My sleep test on 14-Sept-05 was a disappointment and left me wondering about their ability to reliably perform sleep-testing services.  This opinion is the result of how poorly the prescription you ordered was followed by the staff, and how poorly the staff communicated when they decided to modify the prescription.  Had I known going in they were going to be arbitrary about following your order I would have never made the appointment.
 
For what it may be worth, if I were to be asked about this clinic's performance, their grade would certainly be a failing mark.  It would be failing because they didn't perform any CPAP Titration, which was the primary reason for the appointment.  My motivation for all of this was to learn if an xPAP process would help me control the airway obstruction that occurs when I lay on my back.  With the Polysomnography study behind us and no titration experimenting, we are really no smarter now than we were 2-months ago when this appointment was made, but I'm certainly over $500 plus co-pay dollars poorer and feel I didn't receive any value.
 
The following background is a summary of the experience details that may shed some light as to why we aren't any better now than we were 2-months ago.
 
Prescription given to clinic:
Perform "Polysomnography w/CPAP Titration (CPT-95811) Diagnostic w/CPAP pressure determination." (Copy attached)
 
Sleep problem communicated to the test technician Name#1:

• I'm taking this test to find a way to sleep on my back.  Currently that isn't possible because as my muscles relax, something in my airway closes and obstructs my breathing, forcing me to breath through my mouth.
  
• My airway obstruction happens anytime I'm on my back and I don't need to be sleeping for it to happen.  To mitigate this problem, I've learned to only sleep on my sides.  When on my side, my mouth is often open during sleep even if I start out with it closed.  This is especially true when allergies or other pathogens cause nasal congestion.
  
• Side sleeping is not an affective way to mitigate my airway-blocking problem because it forces me to wake up often when one of my arms goes numb.  This constant waking to rollover frequently is making me so tired that it is severely affecting my work.  Work is being affected because my tiredness has me taking 2 to 3 naps a day just to function at a minimal level and even then my concentration is continuing to progressively degrade.
  
• I've tried to sleep on my back with my mouth open, but it always closes just as I'm failing asleep, and then the obstruction forces me awake.
  
• If you need to record the obstruction activity, I'll need to start out on my side, and if you wake me after a little while I'll try to roll onto my back so you can record the obstructive events.  More than likely, the blockage will keep me awake after the first one, but we can try.
  

 
When all of this was passed along, the technician indicated that he understood and would be sure to watch the timing of the process so both stages of the testing were handled correctly.  At the beginning of the test he acknowledged this was going to be a split session and fitted me with a nasal mask to demonstrate how the second part of the testing would feel.  When this technician finished his setup work, I felt as though he understood my needs and that I would be in good hands.
 
 
Performance Results:

• Testing started out as described above, but at no time during the testing did Name#1 or anyone else try to wake me to move onto my back.
  
• During the many times I would wake up from being on my side, instead of just rolling over, I would try to lay on my back to see if I could fall asleep, but not once did I sleep while on my back leaving me to think they never got much data on the obstruction.
  
• During the night I called for Name#1 several times, but only Name#2 answered calls for help to untangle me from the wires for restroom breaks.  During the last restroom break I learned it was 5:35 and the testing would be ending at 6:00 AM.  When I asked Name#2 if they were going to do any more testing, she said no.  She also stated that because I didn't snore too much and she didn't see an abnormal sleep pattern, she didn't see how doing the CPAP Titration would be of any value.  With that perspective she said, "I decided to let you sleep instead."
  

 
Hearing that they had failed to follow the prescription and my agreement with them, I asked that we end the testing 15-minutes early so I could get away from the testing failure and deal with the disappointment.
 
Where are we now?
I don't know.  I don't believe we'll learn much from the Polysomnography results when they arrive in 10-days other than validate the above results.  We might learn how frequently the tossing and turning is happening and what level of sleep is achieved with side sleeping, but the oxygenation values will probably be worthless because of my mouth breathing and side sleeping.  It is unlikely that there will be many events recorded when I would lay awake on my back because as soon as an obstruction occurs, I stop relaxing and that delays the next obstructive event.  We won't get any pressure results to learn how to keep the obstruction clear so we'll be blind if we continue to think an xPAP approach is the best treatment.
 
My goal to stop being so tired all the time hasn't changed.  However I could use some support on what action we might consider.
 
If I follow my instincts, I should just rent, or buy an adjustable xPAP device with recording and storing capabilities that will allow me to display the data on my computer.  This approach would allow me to discover the pressure setting that keeps the obstructive events to a minimum and eliminates the random changing of process at the wrong time.  From what I know already from the brief CPAP mask demonstration that Name#1 did at the beginning of the sleep study, 5" isn't enough pressure to prevent or clear the obstruction when I'm awake.  This information indicates a starting range of 7" to 12" as a good starting point to begin discovery until we find the minimum obstruction clearing pressure range.
 
If you think we should take a different approach, I would certainly appreciate some guidance as I really value your advice.

Thanks again for your feedback.  



Last edited by Roger... on Sat Oct 01, 2005 5:34 pm; edited 2 times in total
_________________
Thanks,
Roger...

Hello RestedGal,
Your name also tells a story.  
 
Thanks for the input.  I had read your posting a few months ago and found it inspiring.  That inspiration added fuel to my fire and helped me to get serious about dealing with my sleeping problem when I learned my side sleeping strategy was part of the reason why I was having nerve damage to my right arm.
 
When I wrote to my doctor (see above), I had your story in mind when I suggested it as an alternate course of action after my prescription failure.  While my use of a physcian is diverging from your exact course, it is because I'm such a analytic that unless I have data and council I don't feel comfortable in making important decisions.  Who said a good education doesn't cause problems?
 

Quote:

The only thing I'd revise in what I wrote in that post is the machine.  I'd get the Puritan Bennett Goodknight 420E autopap with heated humidifier and Silverlining software.  I had that great little machine to begin with, then the Remstar Auto (one without C-Flex, and later one with C-Flex.)   I've also used the ResMed Spirit Auto.  I didn't use so many machines because of any problem with one or another....just wanted to try different ones for the heck of it.  The 420E auto and the Silverlining software remain my favorite.

I wonder if you wouldn't expand upon this statement.  In looking at the products, I find myself gravitating towards the Remstar Auto C-Flex w/Humidifier.  I find this machine atractive because of the removable data card and the integrated humidifier.  I don't like that it is twice as heavy, but I sleep in one place almost everyday so portability is less important.

I also like that there is software like MyEncore.  This indicates the data format is accessible and that says I could write my own reports and charts if the dedicated Encore Pro Data Software doesn't do what I need.

In any event, hearing why you like the "Puritan Bennett Goodknight 420E autopap with heated humidifier and Silverlining software." could help me lean in that direction.  Especially is you do a comparitive outline.

Thanks for responding.  Getting some feedback during new adventures sure makes the transitions less stressful.


_________________
Thanks,
Roger...

Roger,

I don't think you would be sorry by getting the REMstar Auto C-Flex w/Humidifier.
I personally have the REMstar Pro 2 CPAP w/C-FLEX and really like it.  The C-FLEX is a very nice feature.
I do very well on a fixed pressure of 10, so I don't think the "Auto" would have been a great benefit to me, but if I end up getting another machine in the future, it might be a REMstar APAP.  The Smartcard, reader and software are very helpful.  I can't imagine doing this therapy without them.
Hope your letter to your doctor helps with the ordeal you went through.

Best wishes,

Den

Shortly after I started this thread, I noticed the SLEEP STUDY section of this forum.  I've since fixed my ShortCut so it opens to the top level of the forum.  When I noticed the other forum I posted a link to this thread there and Linda offered some nice advice.

Here is the other thread's URL:
http://www.apneasupport.org/viewtopic.php?t=948


_________________
Thanks,
Roger...

Hello Den,
 
Thank you for your kind wishes.
 
Reading your post has raised some questions:

Quote:

I don't think you would be sorry by getting the REMstar Auto C-Flex w/Humidifier.  I personally have the REMstar Pro 2 CPAP w/C-FLEX and really like it.  The C-FLEX is a very nice feature.  I do very well on a fixed pressure of 10, so I don't think the "Auto" would have been a great benefit to me, but if I end up getting another machine in the future, it might be a REMstar APAP.  The Smartcard, reader and software are very helpful.  I can't imagine doing this therapy without them.

I'm favoring the REMstar Auto C-Flex CPAP is this the machine you would switch to if you needed a replacement?
 
Is this the machine you have now: REMstar Pro 2 C-Flex CPAP?
 
If both guesses are correct, are you thinking the added "Auto" feature would give you more comfort, or can you explain your interest?

Thanks for responding.


_________________
Thanks,
Roger...

Hi Roger,

Correct machines.

I've never used an "auto", but one of the nice features of that machine is that if you don't know what pressure works best for you, you can set it to a range and let it find the best pressure for the apneas and hypopneas.  OR, you can run it in straight CPAP mode, with or without C-FLEX.  It's kind of like having several machines in one.  Both of these machines have the Smartcard feature and record apneas, hypopneas, snore index, etc., etc.  Since my profession is in Information Technology, the software and reports from these systems was a feature I really wanted.  Like I said, I can't imagine doing this therapy without knowing day by day how I'm doing.  
In summary, I'm not sure if the "auto" actually gives you more "comfort", but it's a feature that allows the machine to adapt to events that may occur durring the night that will try to keep your apneas and hypopneas virtually non-existent.  Or, another way to describe the "auto" feature is that it's "auto titrating"......what they SHOULD have done in your sleep study.  Had I known a little more about the APAP machine when I bought mine, I probably would have opted for it.  My sleep doctor had prescribed a pressure of 18 for me......that was too darned intense, so after about a half an hour with that pressure, I re-set the pressure to 10 (just a good guess) and after a couple of days, the apneas and hypopneas took a huge drop and have been dropping ever since.  I'm thinking that the CPAP is "training" my body.  I didn't get this way over night and I figure it's going to take a while to reverse things.  I'm also experiencing (as near as I can tell by the fit of my clothes) some weight loss, too......which is supposed to be one of the effects of this therapy.

One other thing about the AUTO machine.....  I believe I've read that snoring can cause the AUTO to escalate the pressures significantly (to try to reduce the snoring).  If this is true, an AUTO may not be the best MODE for me to run that machine in.....because my snoring doesn't seem to correlate with my apneas and hypopneas.  I can have a very low AHI number whether I have very low snore index or a very high one.  My snore index has been steadily dropping since I started this therapy.  Again, that's one of the neat things about the software.....you can SEE the progess you're making.

Does this make sense?  (the explanation about the machines)

Any more questions, please feel free to ask and I'll do my best.

Take care and good luck.

Den

Hi Roger!
Yes, your letter certainly covers your points quite succcinctly.  Within the study, time on your back will be clearly listed, and you can also press them as to what their criteria for a split study is, and then whether or not they followed it.  These numbers vary from place to place, and if a split study is ordered the exact parameters should be ordered for that particular patient.  But for some general numbers to look for, these are some of the criteria we use:

Mandatory split (automatic split regardless of the order): Oxygen desaturation less than 60%
Routine split (this is the AASM criteria, lot of labs use this): AHI>40
Diagnostic split (high suspicion of OSA, or repeat study following surgery, dental device, etc., and just want to meet criteria): AHI>20 and/or desaturations <88%.

So basically, if you end up having time on your back, your AHI is <20, and your lowest desaturation is >90%, then you might make a case that a split wasn't warranted, and further discussion with the physician was needed to decide therapy.
If you had no supine time or they failed to honor their own guidelines, then that's pretty much a boner.
The underlying theme of all of this, though, is that these things were not discussed with you beforehand.  Regardless of the outcome, that's pretty poor performance.
Get the results, then you can really make your case, and hopefully those ranges will give you a rough idea on what to look for.
sleepydave

Roger, either autopap would be a good choice.  The things that make me lean back toward the 420E are the size, using a download cable instead of a smart card/card reader, and the 96 hour graph used in the Silverlining software.  I find that graph gives a great deal of detail and is easy to scroll back and forth through to compare about two weeks' worth of nights side by side.

I've not used Derek's wonderful MyEncore program, as I'm not as interested in "trends" as I am in seeing specific overnight details.  Since I like to experiment with different masks, different ways to control mouth leaks, etc., I prefer to look at what happened "the night before", saving each as a separate file with a descriptive name that lets me easily go back to find, for example, the five nights when I used pressure of _ to _, with an Activa and the DIY.   Or the nights where more leaks than usual appeared when I was trying a different type of tape.  All my little "lab rat" files.  

I find the Silverlining graph to be extremely detailed.  Luckily, that's the software that's used by the 420E, which I like very much.  Also luckily, I have no problem exhaling against the pressure all autopaps have used for me (including the ResMed Spirit) - hardly ever having to touch 12 or 13, and usually operating at 9, 10, or 11.   So, C-Flex is not a necessary feature for me.  Nor do I need the true "ramp" that can be used for starting out with the 420E while in auto mode, for that matter.

Either of those machines' unique features (C-Flex in one, Ramp in the other) could be important to someone else.   The "advanced" settings (IFL1, IFL2, and "maximum pressure for command on apnea") which are available only in the 420E could be important to a few people, too -- in the few cases where some very important trigger settings need to be changed.  The 420E is the only autopap that allows one to make those kinds of "advanced settings" changes.  Again, those are not things that need to be changed for most people, but if they do need adjusting, it can be done with the 420E and not with other autopaps.

I also feel (rightly or wrongly) that the separate sensor tube that runs through the main air hose of the 420E auto is perhaps a better way to collect  air flow data -- closer to the mask.  I know that it shouldn't make a difference where the air flow is "sensed" (up near the mask, or back at the machine itself) as long as a machine's algorithms can interpret it correctly.  However, I do like the idea of the sensing taking place right at the connection of main air hose with the narrow diameter connector hose used by almost all my favorite interfaces.

Recently I read a post on the cpaptalk board where a 420E user had made a long cable with the necessary phone jack on the end to plug into the back of the 420E for downloading.  They just ran the line from computer to machine instead of having to unplug the power and carry the little machine and its power cord to the PC.  I never minded carrying the machine to computer desk, but when I get a 420E again - soon - I'll fix a longer cable for it.

All in all, I'd rather do the downloads that way...via cable..than mess with card, card reader, turning the MSSQL server on and off (I don't leave it running) etc.

Either download method has its pros and cons, as do both machines.  I get very good treatment with either one - PB's 420E auto or Respironics REMstar Auto (with or without C-Flex.)