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[CPAP] APAP replacement
#11
(01-30-2013, 07:13 PM)yroseotex Wrote: Let me preface by saying I am a sleep professional as well as CPAP user. I have a PhD and I tend to analyze, well everything. When I see posts extolling the benefits of autoPAP and none of the caveats, I become concerned. All the auto machines rely on information they get from you through your mask. If you are not using one of the masks specifically recommended by your machine maker, your machine may be receiving false information that it then uses to determine the need for pressure changes. Most of the auto machines rely on an average or spot check of your breathing. That means you continue to have OSA to some extent, how much depends a lot on the variability of your breathing which in turn may vary due to position and/or sleep stage. If you do not have a sleep physician or respiratory therapist regularly review the data from your machine you may still be at an increased risk for heart attack, stroke, metabolic syndrome etc. Most of the "scientific" literature regarding the efficacy of autoPAP compared to CPAP rely on very low subject numbers, often less than 50. Do you really want to subject your health to information that is limited to what happens with a small number of people. Also, most research limits their study subjects to those that do not have many of the co-morbidities you see with sleep apnea. If you suffer from one of those then the machine you are using has not been verified to successfully treat your OSA.

Hi yroseotex, welcome to Apnea Board and the forum.

Thanks for your comments. I appreciate them greatly.

Please don't be offended by push back from fellow members.

Please understand that not all of your co-professionals are like you, diligent in seeking to optimize patient care.

Some doctors or therapists or DMEs will push machines which allow little more than verification of number of hours used but are the most profitable for themselves. Some of us have suffered in the neglectful "care" of one or more such professionals. Please understand this.

I hope you will remain active in this forum and will share your knowledge and insights.

Take care,
--- Vaughn



Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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#12
(01-30-2013, 07:13 PM)yroseotex Wrote: Let me preface by saying I am a sleep professional as well as CPAP user. I have a PhD and I tend to analyze, well everything. When I see posts extolling the benefits of autoPAP and none of the caveats, I become concerned. All the auto machines rely on information they get from you through your mask. If you are not using one of the masks specifically recommended by your machine maker, your machine may be receiving false information that it then uses to determine the need for pressure changes. Most of the auto machines rely on an average or spot check of your breathing. That means you continue to have OSA to some extent, how much depends a lot on the variability of your breathing which in turn may vary due to position and/or sleep stage. If you do not have a sleep physician or respiratory therapist regularly review the data from your machine you may still be at an increased risk for heart attack, stroke, metabolic syndrome etc. Most of the "scientific" literature regarding the efficacy of autoPAP compared to CPAP rely on very low subject numbers, often less than 50. Do you really want to subject your health to information that is limited to what happens with a small number of people. Also, most research limits their study subjects to those that do not have many of the co-morbidities you see with sleep apnea. If you suffer from one of those then the machine you are using has not been verified to successfully treat your OSA.

Welcome to the board.

Unfortunately, your idea of what actually happens to the sleep apnea patient don't seem to agree with what happens to the patients we hear about. Both on this board, and in real life.

It's truly sad, but the real world standard of treatment seems to be:


  1. Stumble around in the dark, ignoring symptoms that scream sleep apnea. Run a lot of inconvenient and expensive tests for other conditions before finally stumbling on sleep apnea.

  2. Send the patient for an overnight in-lab PSG.

  3. Go to a lab with a lousy setup, poor room air conditioning, starting too early in the night vs. the patient's normal sleep schedule, noisy room, slap a full face mask on the patient, tighten it real tight and uncomfortable to prevent leaks, etc. Decide not to give the patient a sleeping pill to take in case she can't sleep in this uncomfortable environment.

    After a terrible night in the lab where the patient sleeps little, if at all, because you didn't give her a sleeping pill, try to make a diagnosis on very poor data.

  4. Either try to do a split night titration, or see if you can get the patient to come back to your "torture chamber" for a second night for a titration.

  5. The titration is done by the sleep technician.

  6. Have an official "sleep doctor" review the results, but in practice, the pressure settings and treatment is usually whatever the tech said, and the doctor just rubber stamps it and rings the cash register.

  7. The pressure setting is done by a sleep tech, based on one night's data, in an uncomfortable night, stressed out patient, sleeping badly, not in her own bed.

  8. Send the patient to a local brick and mortar DME. The DME can increase his profit margin by giving the patient a brick CPAP machine without any apnea or leak detection. The doctor is usually too clueless to insist on a data capable machine. Many of them think they're all data capable when in fact, all they record is "compliance" data that tells whether the patient is using the machine. i.e. just what it takes to get insurance to pay.

  9. Every so often, the DME checks the data, and tells the doctor all is OK, i.e. the patient is using the machine 4 hours a night for 70% of the time.

  10. Even if the patient is lucky enough to get a good data capable machine, the doctor doesn't study the data, and may not get a full report with airflow waveforms. In a small percent of the cases, the doctor may look at AHI, but most of them leave that to the DME, who just gives it a cursory look, mostly checking for compliance.

  11. In general, if the patient is having problems, the doctor won't look at the data collected by the CPAP machine, every night, all night, in the patient's actual sleep environment. It's off to another expensive and inconvenient sleep study that the patient's insurance may not pay for again.

    Never mind that there is a good chance that the doctor could figure out what's wrong, make adjustments, and verify that it worked by using the data the CPAP machine collected and by talking to the patient.


Maybe there are more good apnea doctors out there than we think, but the above scenario is what we hear about here on this board, and what seems to happen to people I know in the real world.

By the way, most of your objections about APAP machines may have had some merit about 10 years ago. You really need to acquaint yourself to the current crop of CPAP machines, such as an S9 AutoSet with ResScan to look at the data.

The modern machines do very well with a wide selection of masks, even if you don't set the correct mask type into the machine.

You also seem to be suffering from the idea that the only way to use an Auto CPAP machine is to leave it set on 4-20 cmH2O. I believe that it will almost always set the APAP to a narrower pressure range. The lower pressure range should be titrated to something that will take care of most of the patient's apneas. The doctor should also review the pressure the APAP machine chooses and evaluate how it's working and make adjustments as needed.

With a good doctor, you can always do a better job if you use an APAP machine, and take a proper look at the data. If necessary, you can set the APAP to manual CPAP mode if the APAP makes "wrong" decisions. Looking at the data is never a negative. Even if you don't believe it's accurate, if it indicates problems, you'd better check it. If it looks good, that gives you confidence in the existing treatment.

You should also be very careful about letting the DME or the DME's RT do your data checking. They have a financial incentive to not see problems.

Also don't forget that one of the common alternatives to CPAP is no treatment at all. If you make CPAP too inconvenient for the patient with extra tests, and not adjusting to her needs, she may very well just give up like a LOT of patients do. Or not get a sleep test at all because she's heard from her friends what a bad experience the whole process was.

Proper CPAP may be the best therapy that the patients who need it don't get because of the lousy system we have.

Stay around and listen to what happens to real patients. Maybe you can help improve the real world standard of care.
Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#13
Excellent post, Arch. Coffee
SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


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.



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#14
yroseotex Wrote: "If you do not have a sleep physician or respiratory therapist regularly review the data from your machine you may still be at an increased risk for heart attack, stroke, metabolic syndrome etc."

I'm with Arch.
The caveat there is you need a Sleep doc or RT *that knows what they are doing*
Some do, some don't but pretend they do, others don't give a crap they just want you to hand over the greens and get plugged into the insurance money mill.
Much like finding a good car mechanic...

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#15
We are more picky about our mechanics than we are about our doctors.

And excellent post, Archangel.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.




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#16
(01-31-2013, 09:13 AM)archangle Wrote: It's truly sad, but the real world standard of treatment seems to be:
<SNIP!>

Wow! Nice post Arch!

Shouldn't we incorporate this into the Wiki somewhere? Grin

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#17
(01-30-2013, 07:13 PM)yroseotex Wrote: I have a PhD

That's OK!

Like you, many of us don't have a degree in medicine. We still value your opinion and look forward to having you continue to be a part of this wonderful group of helpful individuals!

Sleep-well

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#18
(01-30-2013, 07:13 PM)yroseotex Wrote: ...I am a sleep professional as well as CPAP user. I have a PhD and I tend to analyze, well everything...

I see this is your first post so you may not have been around here long enough to get to know us.

It would be helpful for us to know the field of study your PhD is in and what role you play as a sleep professional.

I personally have found this forum to be an excellent source of questions to ask my GP and my Specialist. In turn both are of the view that patients would be better off if more of them took an active interest and took the trouble to be better informed about their condition and treatment. My specialist is a rare commodity amongst the community of senior medicos, some of whom more often seem to do it by the numbers and ignore questions - often coming across as arrogant and dismissive of individuals.

My GP's practice has a 10 Points to better outcomes document that they distribute to patients. The first point is that you have a duty to ask questions of your health professional and a right to get answers presented in a manner you can understand.

Your presence in this forum yroseotex can only be a help to those of us who get less than adequate advice from practitioners.

Welcome.

Cheers

David
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#19
(01-31-2013, 09:13 AM)archangle Wrote: It's truly sad, but the real world standard of treatment seems to be:


  1. Stumble around in the dark, ignoring symptoms that scream sleep apnea. Run a lot of inconvenient and expensive tests for other conditions before finally stumbling on sleep apnea.
LOL I don't know why I'm laughing because it's so real it's not funny.
Before I was diagnosed I confronted my doctor with my symptoms and suspected I had what was called sleep apnea. He denied it to my face. I had to go for someone else's opinion.

Quote:
  • Go to a lab with a lousy setup, poor room air conditioning, starting too early in the night vs. the patient's normal sleep schedule, noisy room, slap a full face mask on the patient, tighten it real tight and uncomfortable to prevent leaks, etc. Decide not to give the patient a sleeping pill to take in case she can't sleep in this uncomfortable environment.

    After a terrible night in the lab where the patient sleeps little, if at all, because you didn't give her a sleeping pill, try to make a diagnosis on very poor data.

  • Aw man, that sounds like my last sleep study.
    For some strange reason they concluded that my CPAP level should stay where it was, and the fact that I slept poorly and had trouble breathing was totally ignored. Let's hear it for science! Thinking-about I'm glad I was lent an AutoSet for three weeks to get a better reading.

    Quote:
  • The titration is done by the sleep technician.

  • Have an official "sleep doctor" review the results, but in practice, the pressure settings and treatment is usually whatever the tech said, and the doctor just rubber stamps it and rings the cash register.

  • I was so disappointed since this seems to be my experience.
    How did you know? Is it that widespread a problem?

    Quote:
  • The pressure setting is done by a sleep tech, based on one night's data, in an uncomfortable night, stressed out patient, sleeping badly, not in her own bed.

  • Yes what a nightmare.

    Quote:
  • Even if the patient is lucky enough to get a good data capable machine, the doctor doesn't study the data, and may not get a full report with airflow waveforms. In a small percent of the cases, the doctor may look at AHI, but most of them leave that to the DME, who just gives it a cursory look, mostly checking for compliance.

  • This will be how it is when my AutoSet is finally approved. Who cares? Not them. I will have to be my own monitor and advocate.



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    #20
    GREAT post, archangle.
    What The Werkz said, it would be a great post to put in the wiki.
    trish6hundred
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