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I have been using CPAP for 80 nights, and am clinically fairly successful; i.e. I use CPAP for an average of 6-7 hours per night, my AHI averages 3-4, and leakage averages 4-5.  But I am still struggling to find a mask that will not wake me up at night from either discomfort or whistling.

I had my first follow-up appointment with a Certified Nurse Practitioner at my sleep center (New Mexico Center for Sleep Medicine), and we got into a bit of an argument over my request for a copy of all of my prescriptions.  First off, I said I would like a prescription for any mask I might choose, i.e. not a specific make and model.  My thought was that I might look up reviews or ratings and mail order any particular mask I might want to try (with insurance not paying, obviously).  You would have thought I suggested she give me a prescription for heroine or some such.  So I said, OK, but I want a copy of all CPAP-related prescriptions.  She said this wasn't the way it worked and, after much explanation of the usual process, bottom line, refused to do as I asked.  Now if a doctor prescribed some controlled substance to me, he would hand me a prescription for it, so I don't understand any rationale for this behavior, other than perhaps her never having had someone ask for something like this before.

In my view, about the only important criteria for a mask are (1) does it leak?, (2) is it comfortable?, (3) is it safe and effective at its intended function?, and (4) is it affordable?  Am I missing something?  If not, then having someone help me with choosing a mask, from the set of around 500 models available on the market,  should take about as much training as a shoe salesman - I ought to be able to buy a mask over the counter, no prescription needed, if I'm willing to pay rather than charging insurance.  I'm not talking about all the complexity of doing a sleep study and deciding on the type of CPAP machine and pressure.  I'm just talking about choosing a mask.

Specific questions:

  • Are there specific standards that state that a CPAP mask must be prescribed by specific make and model?
  • If so, who sets these standards?  AMA?  State medical boards?  Assoc. of Professional Sleep Societies?
  • Is the attitude that I encountered common/universal among sleep centers in the U.S.?
  • Assuming I eventually get a copy of a generic mask prescription/script, are there DME's that provide good service fitting a mask?  How would I find such?

I have tried 11 different masks, and slept with one of each category (pillows, nasal, full face) for at least a couple of weeks each.  All 3 masks I have slept with are OK with leakage and AHI.  I realize some people are still working on this after a year or more, but it shouldn't take that long if there is a solution to be found.  Or, perhaps, the solution is just to resign yourself to discomfort every time you go to bed?  I'm not ready to accept that yet.

I'm also considering transferring to one of the other 3 sleep centers in Albuquerque (there are some other issues of poor service with NM CSM), but not before I ask some questions about how they operate.  If they are all the same, it may not be worth the trouble.

Thanks for any answers and advice.

Bruce

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My doctor wrote a generic prescription for the mask- mask of patients choice.  The prescription was not written on a prescription pad, it was a faxed order for an ASV machine and the settings.  I have a copy of the fax.  I was lucky with my last DME (foolish to change to the group that works with my doctor- not necessary and the previous group gave superior service) in that they had an RT I developed a relationship with who helped me by letting me try on a bunch of masks and test several off the books.  I finally found the mask I needed myself.  I would phone the DMEs covered by my insurance and explain the mask problem and ask if they could help fitting a mask.  I don't have much confidence in either the sleep lab or the DME prviding this help.  I only lucked out with my RT.  A mask should not be uncomfortable.  You can also try the mask library.  For $14 you try a mask for a week- http://www.cpaplibrary.com/mask-trials

I don't see why you can't have a copy of the prescription, or a script for "mask of patients choice".  My experience with some NPs is that they tend to be stubborn and unreasonable.  This might be a deal breaker for me with that practice. Perhaps the DME would give you a copy of the order if you asked.  I had to remind my current DME that there were plenty of companies eager for my business before they really helped me.  By the way- at your doc's office talk to the office manager and the same at the DME.  I always aske for the boss of the boss of the boss.  The office manager will  do.  Good luck.  Oh yeah, ask the insurance company the replacement schedule for supplies.

Thank you, thank you, for this response.  At least triply helpful:

  1. To know that some doc, somewhere has written a generic mask prescription -- means that it is within standard medical practice (unless he was a quack, but I take your word that he isn't!).  My next appointment is with the sleep MD at the lab, and if he has the same attitude as the CNP, I'll be looking for a new sleep lab.  I think the DME will give me a copy, but it is unacceptable for the doctor to refuse to!  And, since I know it is possible, it is also unacceptable to refuse to give me a "mask of patient's choice" prescription.
  2. I never heard of cpaplibrary.com.  Just its existence also indicates that either generic mask prescriptions are common or some vendors treat it as an over-the-counter item.  And it is exactly what I want to be able to try out masks.
  3. Great suggestion to contact office managers.  At my sleep lab, the RTs are great, the doc OK, the CNP not so much, but none of them are really responsible for some other problems that the sleep lab has, and the office manager is the one to talk with.

I am looking at other sleep labs and DMEs, but have't quite given up on the first ones yet.  The DME staff is very friendly and helpful.  My only complaint is the return policy, and maybe I can change that.

By Return Policy am I correct in assuming your mean mask exchange or return?? Be aware that Resmed, PR and Fisher & Paykel all replace FREE to the DME providers any of their masks that patients have tried and been unsuccessful with if the DME provider will fill out a form and return mask and form to the manufacturer W/IN 30 DAYS. There is no excuse for DME providers to offer less than a lenient mask exchange policy.

 

Unfortunately, a prescription is needed to purchase a mask from online DME providers. However, the original prescription that covers CPAP, humidifier and mask can be used for additonal masks.

 

I always suggest that you request your scripting doctor to include the phrases "access to Leak, AHI and AI data" and "full face, nasal cushion, nasal pillows or oro-nasal mask of patient's choice". This ensures that you are provided w/a fully data capable xPAP and because these 4 styles of mask all have different HCPCS (insurance) codes (insurances pay by HCPCS code, NOT by brand and model). There are those local DME providers who will insist on exchanging masks ONLY of the SAME style, not necessarily same manufacturer, as the mask originally provided.

 

And be aware that your family doctor can write a script for your xPAP supplies if your sleep doctor won't comply w/your request to include these two phrases.

 

Also be aware that some local DME providers (perhaps due to state law?) will insist on a new script each year. Your script is good for life w/online DME providers.

You can buy a CPAP or an APAP w/a CPAP script as both are the same HCPCS code, but you can NOT buy a CPAP w/an APAP script.

 

Bi-levels and more sophisticated PAPs have different HCPCS codes than CPAPs and APAPs and can NOT be purchased w/a CPAP script.

 

A script can be as generic as CPAP, pressure setting, humidifier and mask. It can also be written w/specific brand and style and DAW (dispense as written) to ensure that the DME providers can ONLY provide that specific PAP and mask - but there are obvious drawbacks to that specific a script should you want to buy a backup PAP out of pocket online that is less expensive or if you want or need to try a different mask.

 

Thus my advice to request your scripting doctor to include the phrases "access to Leak, AHI and AI data" and "full face, nasal cushion, nasal pillows or oro-nasal mask of patient's choice".

My concern with mask replacement is when it is beyond the 30-day return period.  I suspect that my DME might be double-dipping, by requiring me to return the old ask and also getting paid by insurance for the replacement.  That way, by returning the mask to the manufacturer as a <30-day return, they get a new mask to sell for nothing.  Must be some protection against that obvious ploy, but in any case, if they try to make me return a mask or hose when a different one has been prescribed, I'll be looking for a new DME.

As luck would have it, I got a ResMed S9 AutoSet as my first CPAP, even though I'm not using the autoset feature.  I like the machine, and, with knowledge from the clinician's manual (downloaded online), I can easily read leak, AHI and AI, and, of course, it provides the sleep lab with what they need to evaluate compliance.  Eventually, I'll find and download the software to read the SD card myself, but just haven't gotten around to it.

Thanks for all of the great advice.  I will be discussing that mask script wording with my sleep doc next time I see him.  If he balks, I'll be looking for a new sleep lab, as well!

Hi Bruce,

I've heard a few people say that they had some difficulty getting a copy of their prescriptions. I'm not sure why there's any hesitation to provide them, though.

You have the right to a copy of everything in your medical file. It might be easier to ask for the whole file than for just the prescriptions.

However, if I were faced with this issue, I'd make an appointment to see the doctor, and ask him/her directly for the prescriptions you need.

Usually when I have problems at any medical office, I find that talking directly with the doctor solves the problem.

Most doctors' offices are run by the office/practice manager, and most doctors are unaware (or pretend to be unaware) of many of the details.

But when faced directly with a question, most times they'll respond.

<begin sarcasm>However, I've also found that the question needs to be asked in such a way as to convey the proper level of awe you have for the life-saving skills of the doctor, and hope that s/he will understand the need to appease you, being a mere mortal patient... <end sarcasm>

Worst case I'd call the county or state medical commission, and ask what the rules are for obtaining information that is in your patient file.

I'm sure the answer will be "They have to give it to you."

My DME will give me a copy of my script with little hassle, and I think my sleep center will, too, except for this one CNP who has the old attitude of doctor-gives-orders-patient-follows-orders.  She said "don't overthink it", but I think this translates into "don't think you know enough to choose".  I will be exploring this further with the MD sleep doc at my next appointment.  If he has the same attitude, I will be looking for a different sleep center -- I am fortunate enough to have several in my area (Albuquerque, NM).

I very strongly believe that the best policy is to think of yourself as a partner with your doctor, more or less on an equal footing.  He is the knowledge expert in medicine, but you are the expert in the specific body that is yours, and you will bear all the physical consequences of medical decisions about your body, so you had better take some responsibility for those decisions.  At the same time, it is usually stupid to ignore your doctor's advice, but the doctor, or even the sleep tech, doesn't have enough time to do a great job fitting you with a mask -- that is mostly up to you, and they should give you what you need to let you do it, i.e. an open mask prescription.  Most doctors work well with my attitude today, though I suspect it would have been more difficult a few decades ago.

Somewhere here I posted the information for obtaining your script, medical records, etc. and how to file a comlaint and successfully get them including necessary addresses. You are legally entitled to copies of your medical records via HIPAA if you are in the USA.

 

Your medical records belong to the generating facility or practitioner however HIPAA gives you a legal right to copies. The facility or practitioner does have the legal right to charge a "reasonable fee" for the copies.

 

Most always the facililties or practitioners do NOT charge for copies of your medicals records if you request that they be sent to another doctor so if you have a doctor who is sympathetic to your request for copies of your medical records you could ask that they be sent to that doctor.

Thanks for the info, Judy.  In general, all of my medical service providers have conformed with the policies you state.  I think I just ran into one individual whom I rubbed the wrong way, because I read the clinical data from my CPAP machine, etc.

Bruce, before switching DME provdiers or even approaching any call your insurance company and ask them what local DME providers they are contracted with. If any are "out of network" (not contracted w/your insurance) you will REALLY pay thru the nose! If you have Medicare as your primary and a secondary insurance then check w/your secondary as most all local DME providers accept Medicare. Medicare is usually the local DME providers' "bread and butter" (the majority of their business).

Judy,

I'm in the Medicare plus Medigap category.  I think my Medigap covers any Medicare provider, because Medicare limits what the provider can charge.  One possible implication of this is that, if a mask was very expensive, the DME might refuse to provide it under Medicare, because they would be eating the difference from what Medicare would pay.  But apparently that situation is unusual.  I want one of the new F&P Zest Q masks, and my DME told me it would most likely not be a problem, but they would have to check to make sure.  Understandable and reasonable.

I don't think I am going to need to change providers, either the DME or the sleep lab.  But I am willing to do so if I need to, in order to get the best CPAP/mask solution.

Bruce Bon said:

 I think I just ran into one individual whom I rubbed the wrong way, because I read the clinical data from my CPAP machine, etc.

Yeah, I ran into a sleep doctor like that. SURPRISINGLY a sleep doctor at Mayo Clinic!!! He is NOT Mayo calibre AT ALL!. Bruce A Staats. It was all the more shocking because my family and I have been going to Mayo on and off for some 50 years and have NEVER met anything but kind, caring, knowledgeable doctors - until Bruce A Staats. HE spent almost our entire appointment time ranting about the unreliability of xPAP data. He was NOT about to accept that xPAP data's value is in trending can be complimentary to good PSG data.

 

 

 

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