Mask mods, taping, sleep technicians and rants.

[Blackneto]

I was working with my client at the sleep center on some backup issues and we were discussing how I was doing with my treatment.
I mentioned the adjustment i needed to make with the mask, putting the O-Ring around the pillows. And how it worked.
That devolved into a discussion about the mods people make and what it's worth.
This guy has been on xPAP for about 7 years. I can't remember how long he's been working with people with sleep disorders but it's been at least 10 years.
He's seen all sorts and they normally let people use whatever they are comfortable with. but they draw the line at letting patients tape and glue their mouths shut. It's a liability issue.
One old guy came in with duct tape one night. They told him no, he couldn't use it and why. He went home instead of trying out any of the masks they offered him, Which more than likely they would let him take home as they are samples from the vendor.
I realize taping is what some for treatment to work and this post isn't' an indictment, just some info I come across the past few days.

But we both agreed on how it's silly the hoops people have to go through to:
1. get a mask they are comfortable with
2. the mods they have to make (taping, straps, O-Rings, ect.)
3. one size does not fit all.
4. the expense of new masks causing people to do all sorts of crazy mods.


I think the biggest problem is cost. It's a scam, there's a captive audience and they know it.
DME's making deals with Insurance companies doesn't help. I've read on this forum that it causes them to do silly things like ignoring doctors orders and giving the pats the cheapest machine they can get away with.

I wonder what the barriers are to getting masks that fit produced and barring that, getting the DME's educated on actually helping new users with beneficial modifications.
If I'd known about the O-Rings for my Opus Pillows my first week I would have never found this board because my situation wouldn't have become so messed up. (Not that I want the board to go away )

I'm pretty sure most of this has been gone over with a fine tooth comb, but as a new Hose Head Zealot I'd thought I would share

[WindFlyer]

I wonder what the barriers are to getting masks that fit produced and barring that, getting the DME's educated on actually helping new users with beneficial modifications.

The barrier to producing masks that fit is that everyone's face is different. There are legions of different "types" even if you try to narrow it down to that (oval, round, heart-shaped, long, etc.) So it's the size differential that's the biggest obstacle. Aside from the size differential there are other variables like if you sweat at night that moisture can cause poor seal. Another obstacle may be the fact that everyone's stuck on using silicone for the mask cushion. There are still those of us out here who are not allergic to rubber and might benefit from a better seal of a rubber mask. Another thing I don't get is why more companies don't follow ResMed's example of making a mask that has a contoured shape at the bottom in the chin area. Respironics' mask is flat at the bottom.

On the DME thing- I don't understand DME's at all. Any of them that I've met have not seemed to care enough about the mask itself. They only want to make sure the machine has the right pressure, that you have enough supplies (filters, hoses, etc) and that they sell you something. When I've inquired about the soyala mask of the Hans-Rudolph products they never know what I'm even talking about. You'd think if their job centered on masks that they would care enough to learn about everything that's out there. Maybe they are just salespeople and not RPT's I don't know.

[BadBreath]

I can go to my dentist and in a short amount of time get a custom molded crown, and my insurance will pay half of the $900 cost, but no one will make or help pay for a custom molded life saving device like the CPAP mask. (I know, you need food to live, but you can survive on soft foods. To breathe at night we need hard air, and that requires a mask that works.)

So the manufacturers try to make “off the shelf, one size fits all” masks, and that is all the insurance companies will pay for (and not always even for that). Obviously they are failing. They make them flexible where they should be stiff (on your face) and stiff where they should be flexible (between the headgear and mask). The nose masks anchor at only one point, either the forehead or nose, instead of both like the full face masks, thereby requiring large, elaborate, and overly tight headgear with mechanical adjustments for angle and height to maintain proper contact.

If they would only read this forum they would see that the simple addition of a second, loose stabilizing strap (ala Rested Gal’s pantyhose fix) would reduce and simplify the headgear, even allowing the use of the simple standard four point FF mask headgear. And an overhead hose, rigid from the forehead to the nose/mouth, with 360° swivel between the down tube and the mask would make the interface stable yet self adjusting, eliminating leaks from movement as well as the need for angle and height adjustments, thereby simplifying the headgear even further. The end result would be so streamlined, stable and yet flexible it would fit all sizes and serve even the most deeply imbedded side and face sleepers and the most raucous toss and turners, while being lightweight, comfortable and inexpensive to manufacture.

So with eight months of fiddling and listening to the forum members I have a mask that is so modified you wouldn’t recognize it, professional looking yet like nothing else out there. Yet it incorporates all of the above features and I have been using it in leak free comfort for four months. So why can’t the experts do it, while I am only an average schmuck trying to breath at night?

[TechieSidhe]

I know about the DME and wrong product issue... my pulmonologist just ripped someone a new one at the DME for giving me a regular CPAP when I was supposed to have an Auto-PAP. (He wanted detailed AHI results, all this piece of crap can tell him is when I used it and for how long.) My DME gave me the oldest CPAP they could find in the office, and I bet dollars to donuts they're charging my insurance for the newest one there.

[OldLincoln]

So with eight months of fiddling and listening to the forum members I have a mask that is so modified you wouldn’t recognize it, professional looking yet like nothing else out there. Yet it incorporates all of the above features and I have been using it in leak free comfort for four months. So why can’t the experts do it, while I am only an average schmuck trying to breath at night?

Nice job BB! Comfortable and leak free is a serious accomplishment. I Don't have all the objectives for the perfect mask in front of me, but I do know those are two near the top of the list.

[gasp]

Not that I disagree completely with those who think we're getting ripped off regarding masks that fit, cost, etc. However, I wonder if the issue is, are we able to get our AHI low enough that even masks that aren't custom do the job.