My time (for xPAP) has come! (Slinky, Rested Gal? Help!)

Oh, I do have one more question... for all of you stomach sleepers out there, what configuration (mask, primarily) do you have the most success with?

I sleep on my stomach with my head to one side.

Am I correct in assuming that an over-the-head mohawk style contraption is better than one where the hose comes off the side?

Other than the Breeze, what are some other recommended stomach-sleeper options?

Thanks again, guys!

schleima wrote:Other than the Breeze, what are some other recommended stomach-sleeper options?

The Headrest nasal pillows mask by Aeiomed. Local DMEs have probably never heard of that mask or that company. Some DMEs will order a mask they don't have for you. Others will say they don't order anything they don't normally stock.

If your DME is willing to order the Headrest, here's the company's website:

http://www.aeiomed.com

Or, the DME could order it from cpap.com

Aeiomed has a good video on their site about how to adjust the Headrest:
http://www.aeiomed.com/products/videos.php

Wish they had shown the air hose rigged to hang overhead to keep it out of the way for a toss and turn sleeper.

I guess it would be a little too much to ask that they demonstrate "And, here's how to put on the leg cut off a pair of pantyhose tights, to use as a cradling sling for the nasal pillows, just in case..."

Here are tons of topics about that mask:

LINKS to Headrest nasal pillows mask topics (same mask has had other names: Aeiomed Aura, then Headrest, then Invacare Twilight NP, then back to Headrest again.)
viewtopic.php?t=3098

Cool "Lab Rat" fixes for that mask (and other masks) are here:

LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

OK. Since you asked ...

schleima wrote:What specifically is "the dismal rate of compliance of newly diagnosed patients and why"?

Here are some references for you, schleima.

First, from the Journal of Respiratory Therapists:
http://www.rtmagazine.com/issues/articl ... -06_04.asp

Journal of Respiratory Therapists wrote:The goal of CPAP is to restore normal breathing patterns and maintain normal sleep while maintaining patient comfort. There remain, however, a number of factors that limit compliance with CPAP. In fact, a study performed by Pepin et al6 indicated compliance rates in Europe of 65% to 80%, compared with an even lower effective compliance rate of approximately 46% in the United States. Pepin et al believe that the difference in effective compliance rates between Europe and the United States is due to variations in prescription and technical follow-up care. There are three variables that appear to correlate with increased use of CPAP: female gender, increased age, and reduction of daytime sleepiness scores. The factors limiting effective compliance with CPAP can be divided into three groups: problems with the upper airway and/or the upper-airway mucosa, with mask fit or discomfort, and with equipment. Two other common problems contributing to poor CPAP compliance are poorly trained or inexperienced staff and lack of proper education and training of patients. Compliance rates for CPAP can be improved substantially by overcoming the factors that contribute to poor CPAP tolerance.

I didn't find the referenced study by Pepin, which admittedly is rather dated. What I did find was a recent study published within the past year by the American Medical Association citing only a 63% compliance rate with CPAP therapy. Although a little better than 50%, even 63% represents dismal compliance, IMHO.

http://archotol.ama-assn.org/cgi/reprint/133/1/69.pdf

American Medical Association wrote:Of the 131 patients analyzed, 48 patients (37%) were noncompliant with PAP therapy.

Here is a 2004 presentation by MD's citing 50% compliance:
http://www.utmb.edu/otoref/Grnds/OSA-04 ... 041215.ppt

Compliance is as low as 50%

schleima wrote:- What does "the IGNORANCE of the doctor regarding CPAP devices of your scripting doctor" mean?

See JRT quote above.

schleima wrote:- Other details regarding my doctor's claiming the fraudulent nature of providing a specific APAP prescription (do you have anything to back this up?)

It seems to be common practice for sleep docs to prescribe APAP machines. DME's, according to reports here, refuse to provide APAP's unless specifically directed to do so in the prescription. From my perspective the difference is the same as "generic" vs "name brand". Physicians commonly prescribe specific brands for their patients rather than generics (such as CPAP). If the physician believes APAP to be in the best interest of the patient, then they they prescribe one. That's the real hurdle you need to clear.

Ask the DME for an APAP. I expect they'll tell you that they won't supply an APAP unless the physician's prescription indicates APAP on it, or you pay the difference in price.

Hope this helps.

Regards,
Bill

All good advice above!!!!!!!

I think I'd change doctors if mine didn't listen....that's why they make the "big bucks".....not to shuffle someone off summarily with a "I'm GOD, and you're not"....

One way to coerce a APAP prescription is to ask (nicely) for a pressure prescription in the range of 8-12 or something near that (Since your titrated pressure is 9). A pressure range dictates an Auto machine....

But in view of the above info, I'd be looking for a new doc. I'd be calling the insurance company to determine the DME's in your area they are in cahoots with. I would shine on Brian without hesitation.......

Good luck!!!! Take care -- and let us know how things are going
cheers
goose

rested gal wrote:

schleima wrote:Other than the Breeze, what are some other recommended stomach-sleeper options?

The Headrest nasal pillows mask by Aeiomed. Local DMEs have probably never heard of that mask or that company. Some DMEs will order a mask they don't have for you. Others will say they don't order anything they don't normally stock.

If your DME is willing to order the Headrest, here's the company's website:

http://www.aeiomed.com

Or, the DME could order it from cpap.com

Aeiomed has a good video on their site about how to adjust the Headrest:
http://www.aeiomed.com/products/videos.php

Wish they had shown the air hose rigged to hang overhead to keep it out of the way for a toss and turn sleeper.

I guess it would be a little too much to ask that they demonstrate "And, here's how to put on the leg cut off a pair of pantyhose tights, to use as a cradling sling for the nasal pillows, just in case..."

Here are tons of topics about that mask:

LINKS to Headrest nasal pillows mask topics (same mask has had other names: Aeiomed Aura, then Headrest, then Invacare Twilight NP, then back to Headrest again.)
viewtopic.php?t=3098

Cool "Lab Rat" fixes for that mask (and other masks) are here:

LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

Fantastic suggestions, all.... wow, that's a scary looking rig. But I suppose that considering that my wife and I aren't planning on having kids anytime soon, the Aeiomed mask will work as effective birth control as well!

NightHawkeye wrote:OK. Since you asked ...

schleima wrote:What specifically is "the dismal rate of compliance of newly diagnosed patients and why"?

Here are some references for you, schleima.

First, from the Journal of Respiratory Therapists:
http://www.rtmagazine.com/issues/articl ... -06_04.asp

Journal of Respiratory Therapists wrote:The goal of CPAP is to restore normal breathing patterns and maintain normal sleep while maintaining patient comfort. There remain, however, a number of factors that limit compliance with CPAP. In fact, a study performed by Pepin et al6 indicated compliance rates in Europe of 65% to 80%, compared with an even lower effective compliance rate of approximately 46% in the United States. Pepin et al believe that the difference in effective compliance rates between Europe and the United States is due to variations in prescription and technical follow-up care. There are three variables that appear to correlate with increased use of CPAP: female gender, increased age, and reduction of daytime sleepiness scores. The factors limiting effective compliance with CPAP can be divided into three groups: problems with the upper airway and/or the upper-airway mucosa, with mask fit or discomfort, and with equipment. Two other common problems contributing to poor CPAP compliance are poorly trained or inexperienced staff and lack of proper education and training of patients. Compliance rates for CPAP can be improved substantially by overcoming the factors that contribute to poor CPAP tolerance.

I didn't find the referenced study by Pepin, which admittedly is rather dated. What I did find was a recent study published within the past year by the American Medical Association citing only a 63% compliance rate with CPAP therapy. Although a little better than 50%, even 63% represents dismal compliance, IMHO.

http://archotol.ama-assn.org/cgi/reprint/133/1/69.pdf

American Medical Association wrote:Of the 131 patients analyzed, 48 patients (37%) were noncompliant with PAP therapy.

Here is a 2004 presentation by MD's citing 50% compliance:
http://www.utmb.edu/otoref/Grnds/OSA-04 ... 041215.ppt

Compliance is as low as 50%

schleima wrote:- What does "the IGNORANCE of the doctor regarding CPAP devices of your scripting doctor" mean?

See JRT quote above.

schleima wrote:- Other details regarding my doctor's claiming the fraudulent nature of providing a specific APAP prescription (do you have anything to back this up?)

It seems to be common practice for sleep docs to prescribe APAP machines. DME's, according to reports here, refuse to provide APAP's unless specifically directed to do so in the prescription. From my perspective the difference is the same as "generic" vs "name brand". Physicians commonly prescribe specific brands for their patients rather than generics (such as CPAP). If the physician believes APAP to be in the best interest of the patient, then they they prescribe one. That's the real hurdle you need to clear.

Ask the DME for an APAP. I expect they'll tell you that they won't supply an APAP unless the physician's prescription indicates APAP on it, or you pay the difference in price.

Hope this helps.

Regards,
Bill

I just got off the phone with my sleep doc... you know, the cranky one who told me she would give me a copy of my cpap prescription.

I never actually received the fax from her, and so I called today to follow up. She told me "I never faxed it to you... I faxed it to Brian at the DME." I told her that I wanted her to send me a copy of the prescription anyway. She said "We don't usually give the prescription to the patient." And I said-- yes, I know, but I would still like a copy of the prescription sent to me. Her reply? She began to babble on about how Blue Cross hasn't reimbursed, and how they are not contracted with them anymore, and blah blah blah. She said "I am not in cahoots with the DME to make a profit. Trust the system. You will get the best therapy that you need."

And then she hung up.

Wow. I am beside myself. What the hell just happened?!?!?!?

You need to get a new doc -- post haste....

You also need to call her back and let her know that Federal Law requires her to send you a copy of your prescription as well as all copies of your sleep studies (summary and "master" copy done at the lab) and that if it isn't in your possession in 24 hours you will contact the appropriate authorities with a formal complaint (you might also send a request to her in writing to back up any complaints you intend to file). You might also consider mentioning that you are starting to question her professional competence since she appears not to know even the basic requirements of the law!!!!

Again, Contact the insurance company to find covered doctors and DME's in your area. Find out what your coverage is so that you know when the DME is giving you a line......
Get all the copies of your studies and make an appointment with another sleep doc....
Personally. I wouldn't spend 5 more minutes with this one!!!!

Good luck...take care
cheers
goose

schleima wrote:"I am not in cahoots with the DME to make a profit. Trust the system. You will get the best therapy that you need."

And then she hung up.

Wow. I am beside myself. What the hell just happened?!?!?!?

Perhaps we should consider dissecting this a little bit ...

How many possibilities are there? Here are some that come to mind.
1. Doc severely devalues all patient input, believing it to be of no value.
2. Doc has financial ties with DME, either directly or indirectly.
3. Doc normally treats patients well. You, however, need to be treated like a child.
4. Doc has no training in or experience with two-way communication. Consequently, she simply hasn't heard you yet.

I suppose there are other possibilities to explain that particular phone transaction with your physician. It may not matter much to you personally though what the physician's motivations are, Schleima. Some of us are appalled by her actions, however, and we think that your therapy would be benefited by a change. From what you've said, she clearly has no interest in helping you work through any issues you have raised.

As always, just my opinion, of course, as are the others you've received here. You, however, are the one directly affected by this. Only you can decide what is the best thing for you. We'll still be here to support as best we can.

Regards,
Bill

NightHawkeye wrote:

schleima wrote:"I am not in cahoots with the DME to make a profit. Trust the system. You will get the best therapy that you need."

And then she hung up.

Wow. I am beside myself. What the hell just happened?!?!?!?

Perhaps we should consider dissecting this a little bit ...

How many possibilities are there? Here are some that come to mind.
1. Doc severely devalues all patient input, believing it to be of no value.
2. Doc has financial ties with DME, either directly or indirectly.
3. Doc normally treats patients well. You, however, need to be treated like a child.
4. Doc has no training in or experience with two-way communication. Consequently, she simply hasn't heard you yet.

I suppose there are other possibilities to explain that particular phone transaction with your physician. It may not matter much to you personally though what the physician's motivations are, Schleima. Some of us are appalled by her actions, however, and we think that your therapy would be benefited by a change. From what you've said, she clearly has no interest in helping you work through any issues you have raised.

As always, just my opinion, of course, as are the others you've received here. You, however, are the one directly affected by this. Only you can decide what is the best thing for you. We'll still be here to support as best we can.

Regards,
Bill

schleima wrote:Either way, I do intend to send a letter of complain to my doctor's supervisor. It's outrageous that she denied me a copy of one of my own medical records.

If you're going to write a letter of complaint, I'd recommend addressing it to the state licensing board. It's illegal for her to deny you your medical records, if I'm not mistaken. (Wasn't she the one citing legalities earlier - when she viewed it to be in her interests to do so.)

Regards,
Bill

NightHawkeye wrote:

schleima wrote:Either way, I do intend to send a letter of complain to my doctor's supervisor. It's outrageous that she denied me a copy of one of my own medical records.

If you're going to write a letter of complaint, I'd recommend addressing it to the state licensing board. It's illegal for her to deny you your medical records, if I'm not mistaken. (Wasn't she the one citing legalities earlier - when she viewed it to be in her interests to do so.)

Regards,
Bill

Alright, I couldn't hold out anymore. Here's the letter, copied to the Doc's supervisor. By the way, in order to report a doctor for not complying with HIPAA medical records, the doctor must deny a *written* request for records, so I have established this as my formal written request. What do you think?

-----------------------

I am very distressed by the manner in which you summarily dismissed my request for my own medical records. I take an active part in my own health and therapy, and for you to disallow me access to vital information is inexcusable. According to the Journal of Respiratory Therapy, there is a 46% compliance rate for CPAP patients in America, due in no small part to doctors and DME providers who disenfranchise patients from taking an active part in their own therapy.

http://www.rtmagazine.com/issues/articl ... -06_04.asp

As you are aware, Federal Law under HIPAA requires you to release all copies of medical records to the patient upon written request. This is a formal request for all of my sleep study results and prescriptions.

I would like a copy of your dictated results as well as the full scored data summary report with condensed graphs for both my sleep study on January 11, 2008 and my titration study on April 18, 2008.

In addition, I want a copy of the CPAP prescription that you provided to Aircare, which you refused to provide to me when I requested it on our phone call of May 5, 2008.

You may send me a copy of my records to the following address:

I expect to have these records within two weeks’ time of this mailing.

Hey Schleima,
Well said!!!! Let us know what her response is!!!! (I'd still dump her, but you are right to keep it positive until it all plays out!!!)

Take care
cheers
goose

Here's the response from my doctor (copied to several other people). Remember, she is Chinese so the grammar is a little off.

Yes, I agree ,patients have the rights to access to their records,when properly executed and for proper their medical care.

You did only heard part of the phone communications.I said that you did have the right to have your records.But since the prescriptions of the CPAP is pending on the checking of the Vendor Air Care with your insurance reimburesment,I can not give that to you before the process is done , unless you are willing to self pay regardless.Also, I can not give you a prescription base on an internet searched CPAP machine that you found, which may not be the best one for you, also then you may have to purchase out of your on pocket. As to your own consult notes and sleep studies reports I told you in our last phone conversation that I would discuss with you in our follow up meeting .I have asked you to call our coordinator Lauren at 310 794 9551 to give you an urgent appointment .During face to face appointments I typical give patients their records as requested.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, CPAP, Prescription

But since the prescriptions of the CPAP is pending on the checking of the Vendor Air Care with your insurance reimburesment,I can not give that to you before the process is done , unless you are willing to self pay regardless.

What?
A vendor has priority on your data? You can't do your own reimbursement checking? Did you actually give her permission to disclose medical data about you to a vendor at all, and to that specific vendor???

I think her understanding of the culture she is practicing in is a little off. Not just her grammar.

O.