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My experiences with a custom-made full face mask
#1
Background:
I include this information for the sake of those you may not have read my previous thread, “Anyone heard of Apnea Options for custom masks?”. Others may want to skip to the next post.
Here is a link that provides a really good illustration of this device:

http://www.apneaoptions.com/page51/page51.html

Click on the tab that says “TAP-PAP CM”. For those interested in just the nasal mask, click on “TAP-PAP CS”. Although this is not the dental office from which I purchased my mask (they are in Florida, I’m in Virginia), they were very helpful in answering my questions and have a lot of experience with this process.

This mask was invented by Dr. W. Keith Thornton in Dallas, TX. Here is a link with additional information:

http://www.sleepwellsolutions.com/about_us.php

I actually had the privilege of speaking with Dr. Thornton over the phone. It was a pleasant conversation and he was very helpful. Dr. Thornton also founded the company that makes this product. Here is that link:

http://amisleep.com/

This was a multi-step process. First, it was necessary to obtain a model of my teeth. Once the oral appliance was made, I slept with it in place to ensure there were no problems. I had to have it modified slightly, but after that, there were no issues. Next, a facial mold was made with the oral appliance in place (the first two attempts did not work, but the third was fine). Finally, the mask was made.

The first night I used it was not particularly pleasant:
The bad:
It leaked. When I first put it on and started my CPAP, it leaked around the nose. I kept making it tighter until the leak stopped. I was awakened after about 4.5 hours due to air blowing into my right eye. Also, the mask was so tight that my teeth were sore.
The good:
AHI: 0.2 with only one event for the entire night (albeit only 4.5 hours).
The required pressure was significantly less that previously required. My typical max IPAP was usually around 24 with the 95% at around 21. Last night, it was 21.5 and 17.5 respectively. Of course, this was just one night.
I like the strapless design. I have creases in my head from my mask straps being so ridiculously tight.

The total cost was $4800. I was very fortunate that it was covered by my insurance (effectively at 100%). I had to provide a prescription from my doctor.

As most forum members likely already know, these are MY experiences. Yours and others will vary.
#2
The second night I tried cutting some cloth CPAP mask liners to fit, but that was worse. I then tried lanolin which seemed to make a good seal. But, I was awakened after just three hours and could not stop the leaking. Plus, my wife was complaining about the awful noise it was making.

Last night, I used scuba diver mask sealer. That made a really good seal around my nose, but it still leaked around the mouth area (but not too bad; according to Sleepy Head data, there were no leaks).

Now, would be a good time to point out that although this is a full face mask, it is designed to provide 100% of the air pressure to the nose. The mouth is covered by a separate chamber. This was a surprise to me. It looks like I can drill a hole that will connect the two chambers. I contacted the lab to confirm this would be okay, but have not yet received a response.

Anyway back to last night, which was a big improvement, there were no apnea events (AHI: 0), but again, I only slept for 4.5 hours.

I found an old piece of silicone (CPAP seal gel liner) that I got for my unsuccessful attempt to use a hybrid mask. I cut it to fit the mouth area. My preliminary test indicated a really good seal. I plan to use that tonight with the scuba diver mask seal around the nose (I tried a piece of the silicone around the nose area but it was too thick to allow nasal openings to line up with my nostrils).
#3
Dude... Seriously? A $4,800 mask and you have to cut a hole in it? I didn't pay $4,800 for my first house!


#4
Is this the same "TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece" available as Vendor #1 on the http://www.apneaboard.com/forums/Thread-...plier-List

It sure sounds like it except for the price.

At vendor number one (I can't even write the name since the name is also a web site name Smile ) it costs a whopping $99.

And that is with FREE SHIPPING and FREE RETURN INSURANCE.

Ok, I admit the convenience of not having to make your own mouth fit is worth $4700 more dollars -- oh, wait, that is about as hard as just doing the boil and bite yourself on the $99 mask.

Sorry. I just don't get it.

Same name, same basic design. If it is not the same mask then what are you paying another $4700 to obtain?

BTW, the Tap Pap at $99 is said to be an EXCELLENT mask for those who don't mind the mouthpiece.

Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
#5
None of those other references in the replies include a FULL FACE MASK. If I could use a nasal-only mask, the solution would indeed be simple and cheap. By the way, for reference, as of last October, the place in Florida would provide the same solution for $3300.
Unless I'm missing something, this is a forum for sharing information that may be useful to SOME and not necessarily ALL. If you have no use for any of this data, then don't waste your time attempting to use it. Also, for whatever it may be worth to those mocking my efforts to find a sleep solution, this did not cost me anything but time! My insurance paid for it!
#6
(02-22-2014, 05:42 PM)terp1984 Wrote: None of those other references in the replies include a FULL FACE MASK. If I could use a nasal-only mask, the solution would indeed be simple and cheap. By the way, for reference, as of last October, the place in Florida would provide the same solution for $3300.
Unless I'm missing something, this is a forum for sharing information that may be useful to SOME and not necessarily ALL. If you have no use for any of this data, then don't waste your time attempting to use it. Also, for whatever it may be worth to those mocking my efforts to find a sleep solution, this did not cost me anything but time! My insurance paid for it!
I apologize for what may have seemed to be "mocking" you terp. That was not my intent.
I have three masks right now. Swift pillows, that do not work for me, a nasal mask that works very well, and a Quattro full face mask that is giving me the same problems you are describing. I am trying to make it work for me because my insurance company paid around $150 for it, and I don't like to see insurance money going to waste as that simply raises the costs for everyone.

I hope you get your mask performing the way you wish. Try the Sleepzzz liners. They help my mask work fairly efficiently.



#7
(02-22-2014, 05:42 PM)terp1984 Wrote: None of those other references in the replies include a FULL FACE MASK. If I could use a nasal-only mask, the solution would indeed be simple and cheap. By the way, for reference, as of last October, the place in Florida would provide the same solution for $3300.
Unless I'm missing something, this is a forum for sharing information that may be useful to SOME and not necessarily ALL. If you have no use for any of this data, then don't waste your time attempting to use it. Also, for whatever it may be worth to those mocking my efforts to find a sleep solution, this did not cost me anything but time! My insurance paid for it!

It is a forum for sharing information but don't expect that everyone will agree with that information.

For instance, spending $4800 for a mask that had to be refitted several times and which still leaks.

Other than for someone with a significant developmental issue or injury that makes their head an unusual shape it seems to be overkill.

What is the big advantage IF it WORKS? No strap marks?

Frankly, the entire post sounds like it is coming from someone who is connected to the company.

I am not saying you ARE connected, but just how it sounds, and you never explicitly disavowed that (I would take your word for it if so.)

So how is it explicitly different from the $99 TapPap?

Is this the same company?

(You might have mentioned these things in the post.)

Why is it worth $3000-$4000 more than an stock mask? (Remember you told us it STILL doesn't fit well enough to stop leaks.)

For that price you could have had 20-40 masks and just tried them all until you found a couple that worked.
Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
#8
I have often wondered if, out there somewhere, there was a place to obtain a custom fit mask. To me, that would be a FFM that felt like, well, you weren't even wearing one.
Over the years, however, I have become good friends with my Quattro. That interaction has been strained at times, however, and we still have what I would call a love-hate relationship.
Still, hearing your story, temp1984, the air has been completely let out of my custom fit FFM balloon.
Even if insurance pays for it, at that price it seems outrageous and maybe even fraudulent (if not legally, at least ethically). Thank you for sharing this information.
I know someone who paid 16000 USD for a full set of dental implants that she could not use. The procedure, about 15 years ago, was traumatic physically and costly financially. Emotionally, the failed result was devastating. You don't always get what you pay for.
To err is human, but to really mess things up, you need a computer.
#9
(02-22-2014, 03:25 PM)retired_guy Wrote: Dude... Seriously? A $4,800 mask and you have to cut a hole in it? I didn't pay $4,800 for my first house!

What did you buy - a tent? Rolleyes


#10
(02-22-2014, 08:16 PM)PaytonA Wrote:
(02-22-2014, 03:25 PM)retired_guy Wrote: Dude... Seriously? A $4,800 mask and you have to cut a hole in it? I didn't pay $4,800 for my first house!

What did you buy - a tent? Rolleyes

Back in the day $4,800 got you "his and hers" outhouses. Compete with running creek!


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