During my first consultation w/sleep center they subtly tried to sell me on this equipment, even before they knew I had an OSA problem.  The night of my study, they played a 20 minute video “infomercialâ€� with testimonials to further convince me about it while they were pasting the sensors on my body… Again, before they knew I had an OSA problem.  Why… Do others feel the way that I do?  Why must those in this medical field feel they must work at indoctrinating patients towards this technology?  There certainly are some evident answers to these questions but we’ll leave that to the lawyers.

I was told I would be able to discuss and plan solutions to my sleep problems once my study had been analyzed a couple of weeks later instead my sleep center had a medical equipment company call,  2 days after my study, and try to rush me a CPAP/BiPAP machine sighting I needed it ASAP.  With no consultation about the study findings and possible solutions…What a surprise…?  

I’ve seen the testimonials and read all about this supposed “wonderful� machine and even tried one out from 2-6 am the night of my sleep study, and cannot conceive of ever getting any better sleep than I am already getting with that thing strapped to my face and the base unit worring away on my night stand.

As it was, I had a horrible time with it that night.  I woke up with an awful migraine headache, my stomach felt bloated and achy with air, the line at which the mask met my face was very painful, and the machine noise kept me awake a good part of the time.  I felt restricted in my movement therefore physically uncomfortable as well.

I’ve spoken to a couple of other people who have similar sleep problems as mine and they had CPAP/BiPAP machines prescribed for them.  They ran their machines for a few days before they simply left them turned off and never used them again.  They both say the equipment remains in their bedrooms collecting dust at this point.  One of those folks went on to have some sort of surgery to correct their sleep problems and no longer needs the machine.  

My sleep problems not only occur at home in my own bed but out camping at the lake and while traveling on airplanes and local transit systems where it is inconvenient to have this equipment.  I feel the CPAP/BiPAP machine is not for me. I would like to find other solutions to my sleep deprivation & snoring problems than the CPAP/BiPAP.  Help on this situation would be very much appreciated.

Mendodad wrote:

During my first consultation w/sleep center they subtly tried to sell me on this equipment, even before they knew I had an OSA problem.  The night of my study, they played a 20 minute video “infomercialâ€� with testimonials to further convince me about it while they were pasting the sensors on my body… Again, before they knew I had an OSA problem.  Why… Do others feel the way that I do?  Why must those in this medical field feel they must work at indoctrinating patients towards this technology?  There certainly are some evident answers to these questions but we’ll leave that to the lawyers.

I was told I would be able to discuss and plan solutions to my sleep problems once my study had been analyzed a couple of weeks later instead my sleep center had a medical equipment company call,  2 days after my study, and try to rush me a CPAP/BiPAP machine sighting I needed it ASAP.  With no consultation about the study findings and possible solutions…What a surprise…?  

I’ve seen the testimonials and read all about this supposed “wonderful� machine and even tried one out from 2-6 am the night of my sleep study, and cannot conceive of ever getting any better sleep than I am already getting with that thing strapped to my face and the base unit worring away on my night stand.

As it was, I had a horrible time with it that night.  I woke up with an awful migraine headache, my stomach felt bloated and achy with air, the line at which the mask met my face was very painful, and the machine noise kept me awake a good part of the time.  I felt restricted in my movement therefore physically uncomfortable as well.

I’ve spoken to a couple of other people who have similar sleep problems as mine and they had CPAP/BiPAP machines prescribed for them.  They ran their machines for a few days before they simply left them turned off and never used them again.  They both say the equipment remains in their bedrooms collecting dust at this point.  One of those folks went on to have some sort of surgery to correct their sleep problems and no longer needs the machine.  


My sleep problems not only occur at home in my own bed but out camping at the lake and while traveling on airplanes and local transit systems where it is inconvenient to have this equipment.  I feel the CPAP/BiPAP machine is not for me. I would like to find other solutions to my sleep deprivation & snoring problems than the CPAP/BiPAP.  Help on this situation would be very much appreciated.

Hi Mendodad,

Wow, what a way to make friends and influence people. I certainly would not put up with that !@#! from anyone. Talk about hard sell, from the moment you went in the door. Not very ethical.

First thing, have you any figures from your sleep study ? Do you have mild, moderate or severe apnoea ? Do you have any other conditions ?

Can't really volunteer anything until we know exactly what it is that you have.

Look forward to your post.

Kind regards,

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Hi Mendodad,

Daniel was right in saying it helps to know more about your condition.  I assume you had the full sleep study, and there should be a sleep study report, if you've not already gotten a copy.  That will tell you alot about your condition.

Surgeries.  I admit to not knowing much about them because I hate even taking an aspirin let alone having anyone cut into me.
But I understand success has a lot to do with how mild or severe your apnea is, and the type of surgery.  It's true that in some cases some surgeries can maybe eliminate apnea, but likely only mild cases.  And some surgery can lessen the severity of the apnea while not eliminating it entirely.  And I would research those surgeries, if I were you, as much as possible.  Implants touted as reversible have been described as not so reversible.  You may have heard a number of success stories, but I've also heard some horror stories.  Now, I don't really know if the horror stories refer to mostly one type of surgery.  Again, I didn't care, for I wasn't going to let anyone cut me.  lol  

And it's true, many people do give up on their cpap treatment.  My own brother did that.  But he also has a heart condition and other health problems, and now he's decided it's worth the extra security of trying again, and he's taken some measures to give it another try, like trying a different type of mask.  Some people try it again, and find success.  And it's true, some try everything in the book and still have no success.  But most do find success.

The biggest problem with cpap therapy is compliance, and it mostly has to do with how comfortable the person can be with the mask, how they are able to breathe, and if the machine is prescribed adequately.  Once it's all working good, many overcome the oddness of using it in favor of feeling so much better.  And keep in mind, the sleep lab setting is not the normal way of using it.  At home, it is so much easier.  Look, I struggled with it for a long time myself, and I felt like a freak for wearing the mask and living that kind of existence.  But I tell you, I NEVER want to go back to feeling the way I did before starting cpap.  NEVER!   And I would much rather have this problem than say diabetes where there is so much to worry about during all hours of the day.  

As to traveling, many travel, and even camp, just fine with cpap.  The machines are getting smaller and smaller and so much more convenient. And they're getting quieter and much easier to travel with.  Right now there's a problem with the airlines in allowing cpap machines with tightened security and all, but that will change soon.  And even if you skip (dare I say it?), it's still so much better than going without entirely.  

Sure, investigate everything that might help you.  But be very careful.  Yes, there is surgery.  But like any other type of surgery, you need to exercise caution, and not just rely on only a few testimonials.  Yes, the sleep labs and DMEs do push the equipment, that is for sure.  You have to get used to that, to a point.  Look at television and the print media, have you ever seen such a barrage of drug ads?  

Good luck to whatever you decide.  But as Daniel suggested, you might post more about your condition, and see what feedback you get.


Linda

Your post opens a whole can of worms that I have never seen discussed before.  I also was prescribed CPAP which I struggled with for three months than returned it.  At the time my husband and I wondered if this whole thing was some kind of racket?  Everything about my experience made me a little suspicious but I have never seen that addressed before.  

I do not know what to tell you other than the standard dental appliance and surgery option.  I tried a dental device and could not stand it, people on these boards have scared me away from the UPPP so consequently I do nothing.  But there has always been a little nagging question about the whole sleep clinic experience and aftermath.

....



Last edited by another_guest on Tue Oct 31, 2006 10:57 pm; edited 1 time in total

SusanMH wrote:

Your post opens a whole can of worms that I have never seen discussed before.  I also was prescribed CPAP which I struggled with for three months than returned it.  At the time my husband and I wondered if this whole thing was some kind of racket?  Everything about my experience made me a little suspicious but I have never seen that addressed before.  
 
I do not know what to tell you other than the standard dental appliance and surgery option.  I tried a dental device and could not stand it, people on these boards have scared me away from the UPPP so consequently I do nothing.  But there has always been a little nagging question about the whole sleep clinic experience and aftermath.

 
If you do nothing, are you hurting them, or yourself?  IF you really were diagnosed, regardless of the used car sales pitch, you need to take care of it.  Or you could spite them and die from the consequences...  

CPAP is the safest and easiest form of treatment and should be tried first with any moderate or severe OSA.  The problem is only 80% of the patients can tolerate the treatment of those half stop using the CPAP after two years (my data is a couple years old).  The reason CPAP doesn't work at least for me seams to be mental.  I just had another sleep study and I wore the mask all night, I had about ten apneas over 7 hours, I had over 250 apneas (30%OSA, 70% Central) 4 months before in 7 hours.  I have this positive feedback and last night I still stopped wearing it after an hour, claiming plugged nostrils.

I think it seems like such a sales job because they want you to be as positive as possible.  When I first started using CPAP six years I would sleep 4-5 hours a night, then it kept getting shorter as I would take the mask off while sleeping, it got to the point I didn't want to deal with CPAP.  I went to an ENT he recommended Bimaxillofacial surgery moving both jaws forward.  I had braces for three years, had the surgery last year, seemed to work a little but my AHI is about the same as before (0f course I don't think the surgery is going to help the Centrals).

So basically I am back to trying the CPAP...I know it works if I can just wear the thing.

my doctor didn't even tell me that there are options other than CPAC.  she just told me that i had been diagnosed with mild apnea and should consider using CPAC.  that's all!  I later found out from web that there are oral appliance and surgeries.  whether these options are effective are another issue.  I think the doctor should have told me all available options, and pros and cons.  I'm the one who should decide which therapy to choose.


_________________
mild6

Call me a cynic or a conspiracy theory nutjob, but my buddy (also a fellow sleep apnea sufferer) and I came across an interesting little piece of info on the internet. We were trying to find instructions on changing air pressure on my machine, and believe me I don't think its a good idea to do that, but I was just curious how hard that info was to come by. My buddy is an amateur hacker and computer geek and I bet him 20 bucks he couldn't find the top secret instructions.  To make a long story short we came across these "clinician" manuals and instructions that discussed how to generate more revenue with CPAP adjustments, etc. I mean, it seems to me there is some major money in this field. Do the math. My sleep study cost $2500 and there were 4 rooms there and they told me its booked solid 7 days a week. Anyways, I realize I am ranting but I am suspicious of doctors, insurance companies, managed care etc. I hate my CPAP setup. Its like wearing a jock strap over your head every night. Tommorow I am going in for a somnoplasty consultation and really hope it may help.

Hello everyone, it has been very good for me to read all of responses, thank-you all so much.   I have been so disgusted with my sleep center experiences and had concentrated on them so much that I did not pass along their Sleep Study analysis of my condition, sorry.

I am a 55 year-old man with hypertension and a history of snoring, witnessed apnea (by wife) and daytime sleepiness.
 
Sleep study interpretation is as follows:
  1. Severe Mixed Sleep Apnea with critical oxygen desaturation.
       a.Failed CPAP attempt.
       b.Adequately though perhaps incompletely treated by BiPAP at 10/8 cm H2O with a BUR of 10 BPM.
 2.  Abnormal ECG-PVCs, PACs, PSVT.

There it is.

Daniel, Thank-you for your response.  I was really surprised at how aggressive they were with the CPAP and like SusanMH here I began to wonder if this was some sort of racket…  I guess the real surprise which underlined this suspicious thinking came when they expressed such “deep concern about my conditionâ€� and that I should immediately begin the CPAP therapy but yet the condition was not critical enough to consult with “theirâ€� doctors.  

I finally talked to the same PA that originally consulted with me a couple of hours after the medical equipment company called.  By the way, she quickly set aside the question of ethics of having a sales clerk deliver my diagnosis with a limp apology, almost as though it were common practice for them.  We had a couple of brief consults over the phone where she wanted to only discuss the CPAP therapy.

I have the results from what I believe to be my “full sleep studyâ€� and am not sure what figures mean what…  Which should I look for that would be helpful to you in this discussion?

Linda, Thank-you for your response.  As I told Daniel just now, I believe I had a “full sleep studyâ€�.  I know there is some surgery that can be performed for these conditions as my brother had one of those procedures about 15 years ago.  For him it helped some.  I figure there has been that time between now and then and am interested in the whole scope of therapies available for OSA, not just CPAP or surgery.  I don’t know these options because although it was assured that it would be discussed and a plan would be developed to help my condition with them, it all was passed over for the CPAP therapy.

After pressing my point about other solutions for me with a PA from the center, a couple of hours after the sales clerk had called and delivered my diagnoses that day, she did say for instance that one of the pills I take in my blood-pressure $!@# (Hydrochlorothiazide) has been found to contribute to the “critical oxygen desaturationâ€� condition found in my study.   Again, it was “no surpriseâ€� to me this was not mentioned in the analysis/recommendations of my study while the CPAP was.

Finally, I realize the lab settings for the lab CPAP are set at some average point from which it can be dialed in and customized for each patient.  That some of my discomfort experienced that night can be tuned out, but I’m still concerned about the portability issue, restricted physical movement, and the machine noise.  Is there any CPAP I should look at should I decide to go that direction?

SusanMH, Thank-You for your response.  My sleep center experience felt so odd it’s good to know that I’m not the only one who felt this way.  I certainly wanted to go in to this analysis and therapy with a positive outlook, but it ended up suspect from the beginning.  It was not at all like other studies I’d had.  For example when I went for a Cardio-Stress test a few years back, I worked with both doctors and assistants at a local Cardio Center, no problems were found, but the doctor delivered the analysis and very competently answered all of my questions.

another_guest. Thank-you for your response.  Yes, I’m looking for another sleep center as my GP has strongly suggested.  Do you or anyone else here have a suggestion where I might locate other sleep centers?

Mike, Thank-You for your response.  Your question “If you do nothing..?â€� makes a lot of sense, and I do realize this is about me and not the sleep center, so I am moving forward looking for another sleep center and analysis.  That said however, having never faced this behavior and attitude before from the actual doctors and care givers themselves; I found their operation and ethics questionable and very disturbing.

Bob42, Thank-you for your response.  You’ve certainly gone a few miles down this road and your experiences are quite valuable to me, thanks for sharing.  I wonder now how much of my response to the CPAP is mental… good point.  As I play out my use of this equipment though I cannot help but see it turn out the way it has for you… removing the mask after an hour or so after a few days, weeks, months, who knows.  Then what of my condition?

On a slightly different and personal bent, how does your wife accept your CPAP use?  I’m sure she understands it is for your life, but how does she handle the equipment on you, while in bed with you, and the machine running somewhere close by?

Mendodad

Mendodad wrote:

    another_guest. Thank-you for your response.  Yes, I’m looking for another sleep center as my GP has strongly suggested.  Do you or anyone else here have a suggestion where I might locate other sleep centers?

Here's a link to a listing of accredited sleep study labs.  
Keep in mind many are not accredited.  And that does not mean they are not any good.
The lab where I had my sleep study was not accredited but seemed very professional, IMHO.
My guess is that those associated with a hospital might be fine.
If you can't find an accredited one in your area, call a local hospital and ask if the hospital has one or if it knows of any in your area.

Click here for link to list of accredited sleep study labs


Linda

I am a 55 year-old man with hypertension and a history of snoring, witnessed apnea (by wife) and daytime sleepiness.
 
Sleep study interpretation is as follows:
  1. Severe Mixed Sleep Apnea with critical oxygen desaturation.
       a.Failed CPAP attempt.
       b.Adequately though perhaps incompletely treated by BiPAP at 10/8 cm H2O with a BUR of 10 BPM.
 2.  Abnormal ECG-PVCs, PACs, PSVT.

There it is.

Daniel, Thank-you for your response.  I was really surprised at how aggressive they were with the CPAP and like SusanMH here I began to wonder if this was some sort of racket…  I guess the real surprise which underlined this suspicious thinking came when they expressed such “deep concern about my conditionâ€� and that I should immediately begin the CPAP therapy but yet the condition was not critical enough to consult with “theirâ€� doctors.  

I finally talked to the same PA that originally consulted with me a couple of hours after the medical equipment company called.  By the way, she quickly set aside the question of ethics of having a sales clerk deliver my diagnosis with a limp apology, almost as though it were common practice for them.  We had a couple of brief consults over the phone where she wanted to only discuss the CPAP therapy.

I have the results from what I believe to be my “full sleep studyâ€� and am not sure what figures mean what…  Which should I look for that would be helpful to you in this discussion?

Mendodad,

I'll take the 'kind' view towards your cpap suppliers first.
If the report (sent to them by the sleep clinic) was not good.........the fact that you had mixed apnoeas with critical oxygen desaturation, not to mention your hypertension and abnormal ECGs etc would have raised some serious alarm bells. Again, I am being kind, they MAY have formed an opinion that you were best served by being put on cpap ASAP.

Now that was the kind view. You should have been attended by a qualified respiratory or sleep person to explain your study results to you, the need for therapy. It is not common practice to wade into a hard sell with a patient who is not fully aware of their condition and the ramifications. Thankfully in Ireland we only have 7 companies selling cpap equipment. Complaints are channelled back to us (support group) and we carry enough clout with the clinics and the companies to deal with matters like this.........thankfully not too often.

I know this sounds a bit crass, but I think you should be dealing with another company.

Your sleep study. Figures I would look towards are the number of events, both apnoeas and hypopneas, the blood oxygen saturation levels, highs, lows and averages, AHIs and anything irregular in the cardiac area. In fact anything that highlights a possible problem. Also the findings of the titration study.

If you paste in the full results, Sleepydave is a whiz at deciphering all the data.

FRom the limited information in your post I believe that you need treatment sooner rather than later. I know your initial introduction to the concept of cpap was not good, but it is the gold standard in treatment for OSA. Despite what some people say compliance rates are high relative to other respiratory conditions and it is very effective. Initially it can be a major drag, particularly in the first 6 weeks or so while you get used to it. I am now using cpap for 11 years. It is terrific. The improvement in your life and overall health is tremendous.

The only effective surgery, which is reversible, is the tracheotomy. While successful it is a very tough therapy to handle with a vigorous hygiene requirement and a high possibility of infection. There are numerous other surgeries, with thousands of ENT surgeons willing to cut away at your throat and maxillofacial surgeons willing to rearrange your jaw and face. Loads of pain with no guarantees.

Oral devices are becoming popular, but are usually only effective in treating mild, possibly moderate apnoea.

As regards the effects of your cpap on others........very good. they don't hear you snore, they don't wait for you to start breathing again, they don't have to put up with your mood swings, irritability etc.....they actually get to know a much nicer healthier person.....it's a win win situation.

Keep posting and we'll get you through this.

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

....