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Help asking for right bilevel
#1
Help asking for right bilevel
I have myasthenia gravis and use bipap  the last five years primarily for that. Mild sleep apnea as far as I know from the home study that was arranged in a hurry, my diagnosis was a bit of a blur because I was just released from hospital after my first myasthenic crisis and the hospitalist was fighting the insurance to send me home with a bipap. I just got off the phone with my new DME, which by the way - you will instantly know when you’ve got a good one as I found myself almost in a euphoric state finally talking to someone who was so helpful and actually doing their job. 

DME was able to tell me my prescription is for ResMed AirCurve 10. Isn’t this a fixed machine? Or was she just trying to give me the cheapest but I could ask for the Vauto? Or should I contact my doctor and ask for the Vauto (and Dispense As Written)? My new doctor didn’t even tell me which model she was prescribing. I currently use the DS bipap auto. I definitely need something that can change with my breathing at least a little bit. I’m wondering if I should contact the doctor and ask for the Vauto specifically? I really can’t have a machine that’s lesser than what I now have, but I am having trouble understanding the differences between ResMed’s machines and what would be the equivalent of my DS bipap auto. 

*I will have to get my neurologist involved in getting me the ST-A model eventually as that looks like it’s better for me and he said this at my last appointment before he referred me to this new sleep center. However I am just desperate for a new machine since mine is dying (and recalled). The sleep doctor wouldn’t prescribe the ST-A without her own sleep study which would be 6 months out at least. I think it’s just the insurance coverage, I might be able to get her to write it out if it’s self pay. I just need any machine fast and will work on getting a better model once the new doctor sees my struggles. I don’t understand OSCAR yet but my sleep data looks pretty awful and at this point I am not sure if it’s from having the wrong machine or that it’s been failing for awhile and causing bad breathing. I had no idea there was a better machine for myasthenia gravis until the recall happened and I had to look into a new bipap.

Do I even make any sense, I’m so sleep deprived and my weakness has really ramped up after several nights without my bipap. I’ve had to put more effort into this than my sleep doctor has, she’s not been able to find my records multiple times and is so slow getting back to me and because she just got hired at this center everything has to be run through the higher ups. Nightmare for me. Haven’t even met her, she switched my appointment to zoom and then didn’t have her screen on for most of it. I think once things get smoothed out it’ll be fine.
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#2
RE: Help asking for right bilevel
Magnolia, the Resmed Aircurve 10 is a bilevel series of machines that include the S and Vauto with no backup rate, the ST (spontaneous / timed), ASV (adaptive servo ventilator, and ST-A which is a smarter ST that includes an algorithm called iVAPS (intelligent Volume Assured Pressure Support). I agree with your conclusion that the ST-A is the most appropriate device for your myasthenia gravis, and particularly if you ever have a myasthenic crisis episode. The ST-A can act as a full non-invasive ventilator and is appropriate for treatment of individuals with neurologic disorders like yours. If you want to learn more about the conditions ST-A treats, features of that machine, and protocols for setting it up, you can read the Resmed Sleep Lab Titration Guide starting at page 34 https://document.resmed.com/en-us/docume...er_eng.pdf

Another resource would be to request the Resmed Aircurve 10 ST-A Clinical Setup Manual from the forum. Just follow instructions in the CPAP Setup Manuals link at the top of the page. There are very few labs that are knowledgeable of how to setup these machines. We have helped several members that have acquired this machine to get setup, in part because they are rare, and the expertise to prescribe and setup the machine seems even rarer. There is a Resmed Aircurve 10 ST-A LIsting #3732179 available for sale for $2000 on a site called DotMed. This 2020 machine has 155 hours of use. The seller's phone number is (919) 408-9174 Feel free to call and ask for details. The seller is listed as Philip Saunders, Idle Investment Recovery of NC.
Sleeprider
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www.ApneaBoard.com

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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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#3
RE: Help asking for right bilevel
The AirCurve 10 is the advanced series of the model 10.  There are several model types under this classification.  The 'S', VAuto, ASV, 'ST' and the 'ST-A'.  I probably missed a model, but these are the most common.  The 'S' and VAuto are both Bi-Level machines, primarily used for UARS and to treat OA (Obstructed Apneas).  The difference between the 2 is the 'S' model is a static pressure unit and the VAuto allows for a pressure range setting.  The ASV (Auto Servo Ventilator) is an auto pressure range model that is targeted for the treatment of CAs (Central Apneas), the 'ST' and 'ST-A' (auto) model is targeted at COPD.  All the models provide options to use in a different (lower?) mode, such as, CPAP and static pressures for the auto models.  I am uncertain as to which model would be used for your condition.

I would recommend that you ask your DME which one they are planning to provide you.  Also, check your prescription to make sure the doctor specified that particular model.  If you haven't, obtain a copy of this prescription for your records.  Another thought; Ask the doctor for a script that states,  "Mask and accessories as per patient's choice".   This will allow you to shop online, or anywhere you choose for masks and other items that require a prescription.

Good luck!
- Red
Crimson Nape
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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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#4
RE: Help asking for right bilevel
Thank you Red. Got confused a sec as my real nickname is Red! The DME would only say Aircuve 10. The S model really doesn’t sound appropriate for me. I’m not sure she was being evasive, she said they are putting their order in with ResMed next week and are only allowed to order a limited number of machines. It does look like I’ll be fortunate that I’m not a cpap user so i can get one soon.

Sleeprider thank you for letting me know they’re not familiar with ST-A setup. I think I’m going to have to press for this, it looks like it would keep me from needing to be hospitalized again - not a good experience when hospital staff don’t understand MG. I’ve been through the manual and had previously discussed it with my neurologist and he thought it would be better for me, however he sends his patients to the sleep clinic and doesn’t handle or know about the machines. Then the sleep doctor has absolutely balked. Ridiculous, because a machine is cheaper than the ER or at worst I’ve been hospitalized 7-9 days each time my breathing failed.
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#5
RE: Help asking for right bilevel
I agree with the others. I think ST-A will be the best bet. I myself have used one recently that I borrowed from someone. It's equal to a full sized ResMed ventilator called Astral, except in a lower Max IPAP of 30. It'll have EPAP then a PS Min/Max along with the full set of breath time controls. But the ST-A has the same form factor as the other AirCurve machines, uses same humidifier tub, non ventilator hose circuit, filters. And the HCPCS code is E0471, bilevel RAD with backup rate.

In my opinion, I'd voice my choice is ResMed AirCurve 10 ST-A. I'd not leave it to doc or DME to choose for you.
Dave

OSCAR
Standard OSCAR Chart Order
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Dealing With A DME
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: Help asking for right bilevel
I think it's important to talk about bilevel machines a bit more. The S and Vauto rely on the patient spontaneously taking each breath and have no backup rate. It is inappropriate for MG because the pressure support is proportional to your respiratory effort, and when it is weak, your respiration can fail to meet your minimum needs. The S and Vauto can be set to a pressure support, but what it actually delivers may be much less if your respiratory effort is weak. The ST uses fixed IPAP and EPAP pressure. It has a backup rate in breaths per minute (BPM) to ensure that if you don't initiate a spontaneous breath at the set rate, the machine will switch to IPAP. This machine will provide the set pressure support, but it is constant, rather than adaptive. What this machine cannot do is to ensure you maintain a minimum vent rate, so for people with MG or other respiratory or neurological problem, it will switch from EPAP to IPAP, but there is no assurance you are getting the air you need. The ST-A uses volume assured pressure support that can adjust on a breath by breath basis to ensure alveolar volume needs are met on each breath. The settings require the doctor to set a target vent rate and minimum respiratory rate in breaths per minute. The machine is brilliant in that it stays out of the way providing nice steady pressure and allowing you to breathe naturally, but when you are unable to maintain the target ventilation or respiratory rate, it starts to increase inspiration pressure to deliver those breaths. We have had one member that even used this machine with a tracheal tube, but most just use a CPAP mask. Keep pushing your DME to disclose exactly what they are ordering. Decline anything below an ST and frankly, you should just get the ST-A because your MG qualifies for it, and the ST-A includes the ST mode. This gives your doctor a choice if ST treatment is not optimal, he can learn how to use ST-A with iVAPS.

I provided information on the machine available on DotMed in case you want to risk buying out-of-pocket and possibly getting reimbursed by insurance on an out of network basis. Sometimes it is better to just do the right thing and live well, rather than let others dink around with risky, substandard devices to save a few bucks, or because they don't understand these advanced devices in spite of their supposed expertise. As I said, the ST-A provides all the therapy modes of the S, ST and ST-A, so the only reason NOT to prescribe it is cost. Eventually you will be subjected to many more tests, and guess-work if the right machine is not prescribed.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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#7
RE: Help asking for right bilevel
Sleeprider I’m so thankful for your post and all the information you provided. It is clear I need to talk to my neurologist tomorrow. You are absolutely right that it’s better to live well. Frankly at this point I don’t live at all and I’m hoping better breathing at night might make my days a bit more functional.

This is exactly what I have felt all along, the DS does not initiate a breath and when I’m at my worst I have to take it off and sit up and take more meds and pray the symptoms calm down enough to lie down and rest. I even explained to this new sleep doctor that I wasn’t sure if my machine was breaking (it is) or if my breathing muscles were very weak when lying down (they are). This has sent me back to the ER three times, once admitted and the last two they just pumped me full of prednisone and sent me home to suffer. I didn't have my current neurologist at that point, he is the one who helped me get off long term prednisone because every time we did the slow decrease my symptoms roared back, took us over a year to do. Still, he’s never seen me at my worst and it really helps when a doctor sees everything with their own eyes.
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#8
RE: Help asking for right bilevel
No profession is more full of incompetent quacks than sleep medicine. It is sad that it is an easy way to make a buck. The vast majority of patients present with non-life threatening obstructive sleep apnea that easily responds to constant positive air pressure (CPAP). A few outliers have central apnea. The individuals with neurosurgical disease are lumped in with this completely different cases, and require REAL expertise that is mostly unavailable from the quacks. Let's face it, most of these guys never have to see a patient. People are referred for a routine sleep study (that doesn't even look for problems like MG), and a test is conducted by a technician who generates an automated computer report. The doctor reviews the report and signs off on a prescription, arranges a follow-up and cashes a check. You can't even talk to most of these guys. If you have been referred to a sleep doctor, call their office and ask them to arrange a conversation about your MG BEFORE you ever take a test. Without your medical history a routine test cannot identify an appropriate therapy, and will not even look for it. Nearly 100% of sleep apnea patients are provided CPAP regardless of results. That is not going to work for you as you already know. You have moved to the next stage where you are being evaluated for bilevel, but that won't work either. This is a profession that is run by and for insurance companies to minimize costs, not to meet the medical needs of special-needs patients like you. You really need some assurance your doctor is working for you, and it could be that the best way to make that happen to to be sure your neurologists has a face-to face discussion before any sleep doctor is trusted with your case.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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#9
RE: Help asking for right bilevel
Sleeprider I just had to come back and thank you again for your invaluable responses. After more informed communication with my doctor, things are in motion. Having more information at hand and with a better grasp of what I needed to talk to my doctor about has worked. They’re going to set things up this week so I can get the machine I need rather quickly. I’m still a bit frustrated that I needed some magical key word to open up better communication. These doctors aren’t quacks, but they sure were waddling around! At this point I’m quackers.

I’ve sure learned a lot from visiting this forum, more than any doctor has taught me so far. I still know so little, but at least it’s enough to get me started on the path to breathing better and working with my doctor to achieve restful sleep finally.
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#10
RE: Help asking for right bilevel
Congrats on your progress in the right direction. Keep their feet to the fire so you get this soon.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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