Newbie who needs to vent

[mountainmaam]

I am really hoping my experience is not typical. Yesterday I contacted my insurance company, and I am going to change providers in the hopes that someone else will be more helpful. I received my machine about 5 weeks ago. It was a simple process. She gave me the machine and some basic info on it. She said there was not much to know. There is the power button, the ramp, and humidity. Then she gave me a mask and had me put it on. It did not feel right, and it seemed to be blowing into my eyes. She advised that I have to tilt my head up to avoid leaking. That was it. She said to come back in a month. That darn mask made me nuts. It leaked into my eyes no matter how I adjusted it. Since I sleep on my side, I would wake up each time I rolled over. I called and expressed my concerns, and she kept talking at me rather than listening to what the problem was. When I went in last week I told her that this mask is not going to work for me. She looked at my report and it only showed one leak over the course of the month. I cannot imagine how this is possible, since it was constantly blowing in my eyes, and several times my husband woke me up to tell me that the mask was off. She gave me another and sent me on my way. This one is just as bad. When I called she said that I am only allowed one mask exchange I told her I would really rather try nasal pillows, since the mask hurts my face. She insisted that it would leak even worse, each time I moved it would fall off. Patients do not know what they need, which is why it is her job to tell them. Having been in the business for 25 years, and she takes the lead in what mask should be used.

Really? Please tell me that this is not how this should work. I am ready to throw this thing out the window.

[cobra4x4]

It sounds like you have a REAL BAD supplier who is only interested in the $$$$ and not in your health.

Get rid of her and find another supplier who is willing to work through any issues you may have. The person you have now is not listening to you at all and just because they have been in business for 25 yrs just means they have become complacent. I'd go with a newer company as they need to build up a client base and more likely to bend over backwards to ensure you have a positive experience.

If you can gather a list of suppliers in your area and talk to people or ask here (Helps if we know where your from) for a good supplier.

[Pugsy]

What machine do you have? Make and model please.
Maybe we should look at the reports and see for ourselves just what that leak report shows.
Hopefully you have a machine that we can get you some software to see the reports yourself.

A mask that leaks to the point you can't sleep....either wrong size or wrong mask. To expect you to tilt your head a certain way is unacceptable...definitely need to fire this one.
But let's make sure you have a good machine while we are gathering ammunition to fire them.

[zoocrewphoto]

Let us know what machine you have. If there is data, we can help you find it and print it out. If there is no data, we can tell you, and you tell her that this is no data to support her claim. I suspect you may have been given a machine without data if they care so little about actual success with treatment.

I would also ask her how long SHE has has slept with a mask and machine. If she doesn't have sleep apnea, then she has never experienced what it is like to have an annoying leak in your eyes all night. It just doesn't work.

Personally, I would tell her that you are returning the mask and going somewhere else. This isn't working and you need somebody who will listen and help you find the right mask.

Also, what general area are you in? Maybe somebody here can recommend a place in your area that is more helpful.

[MagsterMile]

I hate to say it but her DME sounds a little like the one that I deal with. Basically, 'why do I want to bother myself with such boring info and that is why she is there to tell me what it all means, blah, blah...'. Thanks to this forum, I don't take the brush offs anymore and I insist on getting the info that I want.

[carbonman]

Really? Please tell me that this is not how this should work.

No, this is not the way it works.
It's your therapy. It's your life.

You get educated.
You find what works for you.
You become your own best therapist.

Thanks to this forum, I don't take the brush offs anymore and I insist on getting the info that I want.

....ahhhh, yes, this is how it works.

[Al N]

Sorry for your experience. No that don't sound right. There are good DME''s out there. You might have to search for them.

You are in the absolute right place. Lots of knowledge and love here. We will help you all we possibly can.

You are right to make sure you get a mask that works for you. Good work don't give in. I don't use the wrong mask because you feel you have no other options. Welcome and good luck on your journey.

[Drowsy Dancer]

Really? Please tell me that this is not how this should work.

No, this is not the way it works.
It's your therapy. It's your life.

You get educated.
You find what works for you.
You become your own best therapist.

Thanks to this forum, I don't take the brush offs anymore and I insist on getting the info that I want.

....ahhhh, yes, this is how it works.

+1. This is NOT how it works. Getting a mask that fits right is a very importart piece of being able to stick with this long-term.

[NotLazyJustTired]

Just from what you stated, it sounds to me like this person is egotistical or a control freak. Yes, after 25 years she showed know how to advise a patient, but if, in 25 years, she has not learned to accept input from her patient, then FAIL! Time to either escalate to higher management, or just push off and find someone who will listen. My sincerest wishes for an acceptable resolution to your dilemma.

[mountainmaam]

Thank you all for the information! I suspected that the issue was just her, but it is good to know that my experience is not the norm. I am already in the process of getting a list from my insurance company on who in my area is in my plan, and combined with your suggestions I should be able to get a better relationship developed with someone else!

My machine is a Philips Respironics BiPap autoSV Advanced System One, I also have a system one humidifier. My previous mask was a ResMed Mirage FX, and my current one is a Mirage Micro. I am located in NorthEast Illinois, but I don't care to go into the city.

I suspect part of my problem is that I have horrid sinuses (shocker for those who need a cpap machine, I am sure but the pressure on my forehead just aggravates the situation. By the time I get the mask tight enough to limit the leaking, I am putting pressure on all of the most sensitive sinus points.

[chunkyfrog]

Contact your insurance, and ask then to send or email you a list of their local in-network DME providers.
Then start checking them out.
Welcome, it's sometimes a battle; but it's a good fight.
The rewards are amazing!

[khauser]

She said there was not much to know. There is the power button, the ramp, and humidity.

Translation: That's all I am required to tell you.

Then she gave me a mask and had me put it on. It did not feel right, and it seemed to be blowing into my eyes. She advised that I have to tilt my head up to avoid leaking. That was it.

Translation: That's the only mask I have [in stock | with me], or that's the mask I make the most money on!

She said to come back in a month. That darn mask made me nuts. It leaked into my eyes no matter how I adjusted it. Since I sleep on my side, I would wake up each time I rolled over. I called and expressed my concerns, and she kept talking at me rather than listening to what the problem was. When I went in last week I told her that this mask is not going to work for me. She looked at my report and it only showed one leak over the course of the month. I cannot imagine how this is possible, since it was constantly blowing in my eyes, and several times my husband woke me up to tell me that the mask was off.

Translation: There was only one EXCESSIVE leak.

She gave me another and sent me on my way. This one is just as bad. When I called she said that I am only allowed one mask exchange I told her I would really rather try nasal pillows, since the mask hurts my face. She insisted that it would leak even worse, each time I moved it would fall off. Patients do not know what they need, which is why it is her job to tell them. Having been in the business for 25 years, and she takes the lead in what mask should be used.

Really? Please tell me that this is not how this should work. I am ready to throw this thing out the window.

Translation: You need a better DME!

Wow, what a pile of trash. I'm sure by now you've received a bunch of good hints, but just in case here's mine: First, if your insurance has a high deductible, consider using an online provider such as our host (CPAP.COM). Does it take longer to get things? Yes, and no. Yes, you can't go to storefront, but no, because you'll get to the mask YOU want and need MUCH faster.

However, if you don't have a high deductible, this may not work as well. CPAP.COM is not a DME that is in anyone's "in network" list. So you might be out of pocket significantly more using them. For masks, you might decide that's OK. It sure beats the once every six month plan! BTW, there's no reason a local DME can't get around that. The once every six month deal is how often INSURANCE will pay for a new mask. They are trying to bill insurance for each mask you try! Instead, they should accept failures back. All of the major manufacturers allow this, so if they're saying "no" that's because they're being greedy!

It really sucks that our first interaction for such a major life-changing process is with such a downer. There are a few DME's on the board that I think have their practice working much better ... just the fact that they are here is a good indicator that they care. But so many of them are really lousy.

If you continue to have trouble with local DME's, I know there are some Internet DME's that might be in your insurance's network. And if you're willing to go out of network or pay yourself, I will highly recommend our host. They've been fantastic for me and many others!

[SleepWellCPAP]

Hello Mountainmaam!

I know this is of little consolation, but on behalf of your DME, I sincerely apologize. This is absolutely NOT how to handle a pressure therapy patient, in fact, it could be a study on how to fail therapy altogether.

As I mentioned in another post, if you or anyone else is having trouble with their provider that can't be amicably resolved, your next call should be to the doctor or his or her nurse. In most cases the DME responds quite promptly as they realize that's where they're getting business in the first place. We work hard to get referral sources in the first place and will go to great lengths to keep them happy.

Regarding the type of equipment, your pressure, type of mask and detailed data download, all those things are important pieces of the puzzle. I really have to take my hat off to this web log, there is an amazing level of expertise here and I'm sure you'll be up and running in no time.

[msla]

If the mask makes too much contact with you sinus areas, you might want a nasal pillow. Another thought is to look at a nasal prong style. I have used one for several years in the past. There must not be many using the prongs because I do not remember seeing them mentioned on the forums. good luck finding the correct mask.

[khauser]

If the mask makes too much contact with you sinus areas, you might want a nasal pillow. Another thought is to look at a nasal prong style. I have used one for several years in the past. There must not be many using the prongs because I do not remember seeing them mentioned on the forums. good luck finding the correct mask.

There are a few prong-style "masks" but they do have limited acceptance. I found that it hurt my nares to use one, but I have really large nares. The prong tended to go in far enough to find sensitive tissue. CPAP masks, by necessity, have to seal, so unlike an oxygen cannula, CPAP prong masks have to fill the nostril. I guess that's why it bothered me...