Replies to This Discussion

Permalink Reply by Janknitz on November 16, 2010 at 5:43pm

You may not be able to get a new machine if Medicare paid in the last two years for one, but that you'll have to see. A newer model, data capable, might help you stick with the therapy this time. At the very least, hopefully the study toight will dial in the right pressure or pressure range to make the treatment more effective for you.

As for the mask, if the mask they try you in tonight works, that's great. HOWEVER, be aware that masks are not one type fits all, and when they order a mask for you (Medicare will replace the mask every three months, so you can certainly get a new mask, even if you can't get a new machine) you want to work with a DME with a liberal mask return policy. Manufacturers allow DME's to return masks that don't work well for a particular patient, so the DME should be willing to let you try on lots of masks and be willing to swap out any mask that is not working for you within 30 days. So don't just go with the first DME the sleep lab suggests--call around and find one who will really help you find the best mask--that's the single most important element to being comfortable and successful with CPAP therapy.

If you can't get a new machine, you may find that DME's are reluctant to work with you as they make a lot of profit off the machines and smaller profit off the masks and other supplies.

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Permalink Reply by Neal Buckner, LRCP on November 16, 2010 at 7:40pm

Sonia,

I really don't understand the need to do a sleep study just for a mask fit. Your DME provider should be working with you to find the right fit. And those office visits are free. The cost of a sleep study is huge and frankly unnecessary if you have a good DME provider. They should have a healthcare professional on staff who can fit you and make recommendations. Even if your mask was right and you were still having sleep issues. The Medical professioanl at your DME should be able to make recommendations to your doctor and/or do a APAP trial to see if your pressure requirements have changed. That's what we do!

In regards to a new machine. Most of the time Medicare will not buy a new machine, or consider buyiing a new machine, before 5 years unless your therapy has changed from CPAP to BiLevel. The CPAP units have a 2 year warrenty and between 2 and 5 years Medicare will pay for the repair if needed and buy a new one for you if the repair exceeds a certain percent of the cost of a new one. Kind of like when auto insurance totals a car.

If your first study was done while you were on medicaid and your state Medicaid paid for your last machine and Medicare has no record on file of ever buying you a machine. You might get away with getting a new one. Since there is no record pre-existing with Medicare. I'm still dumbfounded by the need for a whole new sleep study just for a mask fit. Seems like a huge waste of resourses. Are you sure there isn't another reason you are having the sleep study done? Maybe to re-titrate you to a new pressure?

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Permalink Reply by Neal Buckner, LRCP on November 16, 2010 at 7:52pm

Also,
I noticed you are using an APAP machine. When was the last time you had a downlaod done off that machine? What are you average pressures? If they are below +12 cmH2O, do you think you really need to have a full face mask? Everyone who has untreated sleep apnea breaths through their mouth. But once it's corrected and fitted with the right mask. the need to open your mouth generally goes away. Nasal pillows would be much better in promoting healthy breathing.



Neal Buckner, LRCP said:

Sonia,

I really don't understand the need to do a sleep study just for a mask fit. Your DME provider should be working with you to find the right fit. And those office visits are free. The cost of a sleep study is huge and frankly unnecessary if you have a good DME provider. They should have a healthcare professional on staff who can fit you and make recommendations. Even if your mask was right and you were still having sleep issues. The Medical professioanl at your DME should be able to make recommendations to your doctor and/or do a APAP trial to see if your pressure requirements have changed. That's what we do!

In regards to a new machine. Most of the time Medicare will not buy a new machine, or consider buyiing a new machine, before 5 years unless your therapy has changed from CPAP to BiLevel. The CPAP units have a 2 year warrenty and between 2 and 5 years Medicare will pay for the repair if needed and buy a new one for you if the repair exceeds a certain percent of the cost of a new one. Kind of like when auto insurance totals a car.

If your first study was done while you were on medicaid and your state Medicaid paid for your last machine and Medicare has no record on file of ever buying you a machine. You might get away with getting a new one. Since there is no record pre-existing with Medicare. I'm still dumbfounded by the need for a whole new sleep study just for a mask fit. Seems like a huge waste of resourses. Are you sure there isn't another reason you are having the sleep study done? Maybe to re-titrate you to a new pressure?

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Permalink Reply by Sonia S. on November 17, 2010 at 5:46pm

Hi Janknitz,
Thanks for your reply and info provided. I'm not sure if my machine was paid by Medicare or by Medicaid, I had both at the time I got it. When I got my machine and face mask I was only told that I could get a new mask I think about every 6 months. The only time the DME spoke with me was when the rep/tech came to my home to bring the machine and mask and told me how to use it. After that, I never heard again from them and I since I didn't use the equipment because of how big, bulky and uncomfortable the mask was, which I didn't know I could have asked to replace with a different mask, I didn't bother contacting the DME to talk with them again. At the time I really didn't know anything about OSA or it's treatment, or equipment options, only that I was supposed to use the C-PAP to sleep. None of my doctors know much about Sleep Apnea, or the dangers of not treating it, so didn't encourage me to follow the treatment of using the C-PAP.

Unfortunately it looks like I won't be getting a new mask or machine because of the sleep study last night. I will explain in another post.

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Permalink Reply by Sonia S. on November 17, 2010 at 7:11pm

Hi Neal,

Thank you for your reply and info provided. Yes, I'm aware that there is no 'one size fits all' mask. I didn't know Medicare would replace the mask every 3 months, I was told by the DME that got me the equipment that I could get a replacement mask every 6 months, and I believe replace the machine after 5 years. This DME didn't tell me that I could try the mask I got for 30 days and if it didn't work for me have it replaced with another one, I wish they had. I had my first sleep study at a hospital and didn't know I could choose my own DME.

I too don't know why the ENT doctor I went to so I could get a prescription for a new mask didn't just tell me I could get it without having to go through another sleep study. Maybe it's because it's been 2 years since the first sleep study and because I lost a lot of weight (over 140 lbs.) in that time. Like didn't know I could just contact the DME that got my equipment for me 2 years ago and asked them to fit me for a new mask, I thought I needed a prescription for a new mask and that in order to get that I would need a new sleep study. Dr. Liberatore didn't tell me otherwise.

The info has never been downloaded from the card of my ACPAP machine. I took the card with me to the sleep clinic last night and showed it to the tech and ask if they would look at the info in it but she didn't take it so it wasn't done.

The reason I needed a full face mask is because my mouth always opens at night when I relax in sleep, the lower jaw bone doesn't align with the upper one (which is something a dentist has told me needs to be corrected surgically), so it cannot be helped and I don't think a chin strap would work. I wanted to try the nasal pillows that come with a mouth mask but was concerned it would dry out my sensitive sinuses even more. Anyway, I didn't and won't be able to try that mask or any other after last night's sleep study. I guess I should be happy if it turns out I no longer have OSA, but now I'm worried I won't be able to get treatment for my chronic sleep problem.

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Permalink Reply by Sonia S. on November 17, 2010 at 7:25pm

I had a bad night at the sleep clinic, felt like I wasn't able to get more than a few minutes of sleep, kept being woken up by noise (the 2 techs' and another (elderly) patient's voices, and toilet flushing). I think the first sleep study I had, at a hospital, was better, it was less noisy, though I still felt I wasn't able to sleep much.

I'm not used to going to bed early but had to be in bed before 10. I got to the clinic around 8:30pm, settled in my room by 9, a tech came to wire me up (with dozens of electrode wires, some taped over my face), and told me that the study would begin at 11pm. I stayed in bed (hard to move around carrying so many wires on you) and watched TV trying to get myself in the mood to sleep. By midnight I turned the TV off to try to fall asleep. Just as I felt I might be falling asleep the elderly patient in the room next to mine started calling for help. After about 2 minutes of hearing her yelling "Hello" and "Can someone help me" I got myself out of bed (after disconnecting from the machine and pulse reader) and went to see what was going on. The 2 techs had left (probably around midnight) and left us (3 or 4 patients) alone at the clinic. The elderly lady needed help getting unhooked from the machine so she could go to the bathroom. I helped her, searched the clinic to try to find one of the techs, then tried to help her get back to her bed after getting her connected again to the machine and pulse reader, and after a while went back to my bed to try to sleep; it was a few minutes past 12:30am. Several minutes later I heard the voices of the 2 techs and the elderly patient. As time keep passing I kept worrying that I would not be able to really fall asleep before I needed to be out of the clinic.

Around 1:30 one of the techs came to reconnect the sensors that had disconnected from my legs when I moved. I told her that I had to help the elderly patient to go to the bathroom when she needed help and they (the techs) were gone. She said thank you and that she was sorry about that, but didn't say where they had gone to and why they left us patients alone in the sleep clinic for over 1/2 an hour. She said later she would start the CPAP using a mask that covers the mouth but had nasal pillows. I was still worried I wasn't going to be able to really sleep. Some time later she came back and said she didn't think that I would need the CPAP treatment because, even though I had snored a little and had some apneas, she said I was sleeping ok and my oxygen saturation remained good. I told her I didn't think I had gotten much sleep, but she said I had. I was worried that if I really wasn't sleeping that I might not get a good sleep study. So I went the rest of the night without getting the CPAP and didn't get to try a new mask.

At 5:30am the tech came to disconnect me from all the electrones and wires and gave me 2 forms to fill out. I told her that if I was found not to need the CPAP because of this sleep study that I was worried that I wouldn't get any treatment for my chronic sleep problem. She said that because of my drastic weight loss I might not have OSA anymore, but I told her that I believe I still do because I feel it sometimes when I sleep and wake up feeling like I didn't get enough oxygen throughout the night or much restful sleep, that I sometimes wake up with headache and feeling more tired. I have (permanent?) dark spots under my eyes from not being able to get good, restful sleep. Now what am I supposed to do? Do I just learn to live without getting good, restful sleep?

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Permalink Reply by Donna B. on November 17, 2010 at 10:11pm

Sonia, I had 2 sleep studies, 4 weeks apart. I went to an actual sleep lab, it was not in a hospital.

Where was your sleep study done?

I asked my technician if she would be with me all night if I needed anything and she was. We communicated through the intercom system in my room. I did wake up a couple of times and she would ask if I was ok. (it was a little unnerving knowing I was being watched on camera but that's how it's done.)

Is it possible that your technician was taking a meal break when you needed her?
Even still, someone should have been monitoring you at all times.

Also, I was told by my technician that she could not discuss any findings from the study because it was the Doctor's responsibility.

Did you go to a Sleep Apnea doctor or an ENT ?

I was referred to a sleep doctor after I finally got my GP to order a sleep study. It took me over a year of complaining of my fatigue and sleepiness to get him to listen to me ! It is a shame that so many people suffer from OSA and do not get the care they need.

I hope you can go back to your DME and get a new mask to try. I am on my second one and am doing so much better.

Don't give up!! With all the great folks here you will get the help you need. I am so thankful for them everyday.
Best wishes,
Donna



Sonia S. said:

I had a bad night at the sleep clinic, felt like I wasn't able to get more than a few minutes of sleep, kept being woken up by noise (the 2 techs' and another (elderly) patient's voices, and toilet flushing). I think the first sleep study I had, at a hospital, was better, it was less noisy, though I still felt I wasn't able to sleep much.

I'm not used to going to bed early but had to be in bed before 10. I got to the clinic around 8:30pm, settled in my room by 9, a tech came to wire me up (with dozens of electrode wires, some taped over my face), and told me that the study would begin at 11pm. I stayed in bed (hard to move around carrying so many wires on you) and watched TV trying to get myself in the mood to sleep. By midnight I turned the TV off to try to fall asleep. Just as I felt I might be falling asleep the elderly patient in the room next to mine started calling for help. After about 2 minutes of hearing her yelling "Hello" and "Can someone help me" I got myself out of bed (after disconnecting from the machine and pulse reader) and went to see what was going on. The 2 techs had left (probably around midnight) and left us (3 or 4 patients) alone at the clinic. The elderly lady needed help getting unhooked from the machine so she could go to the bathroom. I helped her, searched the clinic to try to find one of the techs, then tried to help her get back to her bed after getting her connected again to the machine and pulse reader, and after a while went back to my bed to try to sleep; it was a few minutes past 12:30am. Several minutes later I heard the voices of the 2 techs and the elderly patient. As time keep passing I kept worrying that I would not be able to really fall asleep before I needed to be out of the clinic.

Around 1:30 one of the techs came to reconnect the sensors that had disconnected from my legs when I moved. I told her that I had to help the elderly patient to go to the bathroom when she needed help and they (the techs) were gone. She said thank you and that she was sorry about that, but didn't say where they had gone to and why they left us patients alone in the sleep clinic for over 1/2 an hour. She said later she would start the CPAP using a mask that covers the mouth but had nasal pillows. I was still worried I wasn't going to be able to really sleep. Some time later she came back and said she didn't think that I would need the CPAP treatment because, even though I had snored a little and had some apneas, she said I was sleeping ok and my oxygen saturation remained good. I told her I didn't think I had gotten much sleep, but she said I had. I was worried that if I really wasn't sleeping that I might not get a good sleep study. So I went the rest of the night without getting the CPAP and didn't get to try a new mask.

At 5:30am the tech came to disconnect me from all the electrones and wires and gave me 2 forms to fill out. I told her that if I was found not to need the CPAP because of this sleep study that I was worried that I wouldn't get any treatment for my chronic sleep problem. She said that because of my drastic weight loss I might not have OSA anymore, but I told her that I believe I still do because I feel it sometimes when I sleep and wake up feeling like I didn't get enough oxygen throughout the night or much restful sleep, that I sometimes wake up with headache and feeling more tired. I have (permanent?) dark spots under my eyes from not being able to get good, restful sleep. Now what am I supposed to do? Do I just learn to live without getting good, restful sleep?

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Permalink Reply by Sonia S. on November 18, 2010 at 12:21am

Hi Donna,

My first sleep study was done in the sleep clinic of a hospital (which closed the following year so I couldn't get my result when I called after the clinic had been closed). Last night's sleep study was done in a sleep clinic, The REM Sleep Disorder Center in NYC; it was scheduled after being referred to it by the ENT doctor I saw, one of the center's own doctors, Dr. Liberatore, who's an ENT and a sleep apnea doctor. I had gone to her to check for nasal passages and to try to get a prescription for a new face mask. I had told her I had had a sleep study about 2 years before, when I was still morbidly obese, and asked it I should get a new one.

At the sleep clinic I wasn't the one that needed help, it was the elderly patient that was in the room next to mine. The 2 technicians had left the clinic, leaving the 4 patients there alone during the time they were gone (at least half an hour). The tech that set me up had told me that they would be monitoring me during the night and if I needed any help to just wave my hand and one of them would come to help me. Well, yes it is possible the techs had left to take a meal break, but they shouldn't have both left the clinic for over half an hour, leaving the patients unattended. That was unprofessional of them. They should have taken turns, one stay at the clinic while the other one took a break.

My tech didn't really discuss the findings of the study, just told me why she didn't do the CPAP part of the study for me. I'll need to wait about 10 days to get the results from Dr. Liberatore; will probably need to go in to her office to hear them. Since I wasn't given the CPAP during the sleep study so couldn't try a new mask I'm worried now I won't get any treatment for my chronic sleep problem. My friends tell me I should ask for another sleep study at their cost since they messed up on this one, but I really doubt that's gonna happen. I'll have to wait til I speak with the doctor about my results to see what will happen.

Thanks for the good wishes. I'm glad you got the help you needed.

Sonia

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Permalink Reply by Mary Z on November 18, 2010 at 8:54am

There is a book - Sound Sleep Sound Mind by Barry Krakow- read about it on Amazon, or check it out from the library that should help you get a good nights sleep. Maybe someone from the Book Club can suggest another book to learn about sleep hygiene.

Sonia S. said.....I'm worried now I won't get any treatment for my chronic sleep problem. My friends tell me I should ask for another sleep study at their cost since they messed up on this one, but I really doubt that's gonna happen. I'll have to wait til I speak with the doctor about my results to see what will happen.

Thanks for the good wishes. I'm glad you got the help you needed.

Sonia

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Permalink Reply by Sonia S. on November 18, 2010 at 1:01pm

Can someone tell me what I should ask the doctor when I go to get the results of my sleep study?

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Permalink Reply by Sonia S. on November 18, 2010 at 2:36pm

Ok, so if I only have Hypopnea Syndrome instead of OSA what can I do to improve my sleep? The reason I went to get the second sleep study was so that I could get prescribed a new mask for my C-PAP machine, but the tech didn't think I needed the PAP therapy during my sleep study so I didn't get to try a new mask. One of the treatment for Hypopnea is the use of C-PAP, but I can't use mine with my current mask. What do I do now?

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Permalink Reply by Sonia S. on November 18, 2010 at 2:37pm

Oh, and if I didn't get much sleep during the sleep study, how effective can the results be?

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