Wow. (Mom's bad DME)

[sleepylynn]

Well, now I see what people mean when they talk about their awful experiences with DMEs. I'm under-insured, so I don't deal with a DME - I'm doing everything on my own.

My mom, on the other hand, is well insured and has been on CPAP for around two months. In her sleep study, they said she breathed through her mouth, so her doctor informed her she would have to wear a full face mask. They let her try ONE style of nasal mask (from her description, it sounds like the PR ComfortGel, which I also have and hate), then sent her home with the first full face mask they tried on her.

Since the day she brought her machine home, she's been complaining about having to cinch the headgear down so tight that it leaves the back of her head sore. She called the doctor, who told her to contact the DME he'd sent her prescription to, and they told her she just needed to get used to it.

Cut to yesterday. She's been fighting with this thing for two months now, and finally got the DME to agree to let her try a different mask. I rode along with her. When we got there, we found out that they'd ordered the exact mask she has, just in a smaller size. Which is fine if it works...but when she asked them (on my advice) if she could try on a few different ones to see if something else would work better, they said, "We'll need to try this one first and see."

They had her try on the smaller size they'd ordered, and it appeared to fit okay...but they didn't use a machine to make sure it would seal with air coming through it, and I was super unimpressed with that refusal to let her try something else.

My stepfather has had a totally different experience - his DME is awesome, and he probably tried on 10 masks before they sent him home with one. Different insurance, totally different experiences. Crazy.

[Sir NoddinOff]

Hi Sleepylynn. Several years ago it used to be most people on this forum routinely reported good to fair experiences with their DMEs. Nowadays it seems like a positive experience (your dad's for instance) is becoming more and more rare as the big chains take over. Any chance of getting a new and better DME if your insurance allows it in-network (maybe even if not in-network). Your mom's DME won't be Apria would it

[Ladyflower]

Unfortunately, I think some DME's are used to saying what goes and not being questioned about it. When my husband got his CPAP supplies he didn't know any better to ask questions and just took what they gave him. Lucky for him it worked out. When it came time for me to get my equipment I did my homework well before hand. Even with insurance I knew I was going to be shelling out a good amount of money because I needed an ASV. So, I declined the old model they tried to give me and specifically requested the newest model - which I was told I would have to wait for them to order. Fine with me. I also specifically requested the mask I wanted to try. They tried telling me because of my high pressures that I could only use a full face mask. Once again, I refused and asked for the nasal pillow mask that I sucessfully used for the last 2 years.

I am not the kind of person to give someone a hard time just for the sake of it. But, if it's my money I am going to get what I want, unless you can explain to me in acceptable terms why it's not possible.

[chunkyfrog]

Funny, the results when they finally believe you really will WAIT to get what you want/need.
At some point many realize they are shorting themselves by putting you off, and get their butts in gear.

[The Choker]

cinch the headgear down so tight

Why is she doing that? None of the masks are designed to be adjusted tightly.

[sleepylynn]

cinch the headgear down so tight

Why is she doing that? None of the masks are designed to be adjusted tightly.

Because she's received zero education from her doc or DME, and she wasn't allowed to try multiple masks to find out what a good fitting mask is supposed to feel like. So when she got leaks, she thought she could stop them by just tightening the straps more.

[The Choker]

Because she's received zero education from her doc or DME, and she wasn't allowed to try multiple masks to find out what a good fitting mask is supposed to feel like. So when she got leaks, she thought she could stop them by just tightening the straps more.

Yep.

If she needs a full face mask, I recommend this one - https://www.cpap.com/productpage/resmed ... dgear.html

floats on your face, has a great headgear, adjusts very lightly.

[sleepylynn]

Thank you for the recommendation! I will pass it along to her.

[archangle]

Many full face masks don't fit right if the headgear is overtightened. It needs to work like a hovercraft. The "skirt" needs to inflate and seal around her face.

What mask does she use? What machine does she have, and what are her pressure settings?

[sleepylynn]

I'm giving her the instructions Choker linked to - hopefully that will help. I think she has the ResMed S9 machine, but I don't know her pressure setting. She's a lot less willing than I am to try anything other than what her doctor said - she's even afraid to try a mask other than what the DME gives her because she thinks insurance will consider that non-compliant and drop her CPAP treatment entirely. I've told her to talk to her doctor and ask about it - maybe he can put her more at ease with trying different mask styles.

She's also convinced that she's only allowed to wear a ffm because that's what the doc told her after she had her sleep study (apparently she breathed through her mouth for part of that night). They didn't even give her any other option, like a nasal mask with chin strap, to see if something else would work. Just, "You have to have a full face mask, here's this one, goodbye." What a fiasco.

[SewTired]

My advice is to go back down with her and insist on multiple masks. Tell them that if they can't provide service, you will take your mother elsewhere and they will lose her business. If she is there because it is Medicare, you will also report the poor service to Medicare. Then DO SO! Medicare has contracted with some really loser companies and forced patients to suffer poor quality care. This will not change unless patients report their personal experiences. It really sucks when you have a small office. My Lincare office is small and has limited masks to try. Fortunately, they have the most popular masks available which increases your chance of success. Unfortunately, I have to drive 1/2 an hour to get to their office vs. 5 minutes to a local provider. It's not just annoying - it limits many people on their ability to even GET to a provider without taking time off of work (either they or their driver).

[sleepylynn]

Yeah, this one's pretty small too - maybe that's why they're so fidgety about letting her try something else. I've given her some other ideas on masks to try, and I think I've just about got her convinced to let me talk to them next time she goes in. I'm going to find out why her doctor insisted on this particular DME, too, and if we have to make a complaint, we will. At this point I don't think she's sleeping any better than she did before they prescribed CPAP.

[The Choker]

My advice is to go back down with her and insist on multiple masks.

What are you talking about?

If you are talking about trying them for size in the office, a small DME may have limited stock.

If you are talking about taking them home for use, Medicare only allows a new mask every ninety days.

[Janknitz]

My advice is to go back down with her and insist on multiple masks.

What are you talking about?

If you are talking about trying them for size in the office, a small DME may have limited stock.

If you are talking about taking them home for use, Medicare only allows a new mask every ninety days.

Manufacturers provide FREE sample masks to DME's for fitting purposes. A good DME will use the sample masks as intended--to let people try them on for fit and comfort. Other DME"s sell the samples out their back door, or raid the sample packages for parts they then charge the patients for.

THIS DME was avoiding any trying on, they only let her "try on" the mask they intended to send home with her in the first place. They may buy one of each type of mask in bulk for a good price, and refuse to let people know they have other options.

It's Medicare open enrollment right now. Maybe your mom wants to switch to the same Medicare supplement her husband has, and access a better DME.

BTW, threatening a DME with taking your business elsewhere has little to no effect these days. There's an endless supply of patients streaming through the Medicare approved DME's door, and since there's little if any profit on masks they couldn't care less if they lose your business.

[library lady]

Sleepylynn, another option that might work for your mom if she isn't able to find a mask that works is mask liners. I could not control leaks until I learned about these, and they were a game changer for me, especially since I was able to continue using the mask I was first given... two excellent sources are Pad-A-Cheek at http://www.padacheek.com and RemZzzs, available at https://www.cpap.com and from many DMEs. The RemZzzs are supposedly a disposable, one-time use liner, but I have learned that if I wash and iron them they can be used over and over for a very long time.