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My experiences with a custom-made full face mask
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terp1984 Offline

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Posts: 45
Joined: Apr 2012

Machine: ResMed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: ResMed Quattro FX
Humidifier: ResMed S9 H5i
CPAP Pressure: EPAP 5 to 15, IPAP 10 to 35
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: South Carolina

Post: #11
RE: My experiences with a custom-made full face mask
Forty-five years ago while working at a gas station, a customer was outraged when I charged him $10 to replace a 50 cent dash light bulb. When I pointed out that it took two hours to take the dash apart, replace the corroded socket and put it all back together, it didn’t seem to make any difference.

When I started this thread, I was intent on not being guilty of information-overload, so I tried to be as concise as reasonably possible. It is now clear that, based on the comments about cost and perceived value, the information I provided so far is woefully inadequate. So, I will give it another shot, even though it may not make any difference.

This oral appliance (OA) device is for both upper and lower teeth. Either piece can be used separately or connected together. When in the latter state, it is adjustable so that it can also be used as an oral orthotic (OO). The OO can be used stand-alone or in conjunction with CPAP therapy. As an OO, it will work with almost any CPAP mask and of course it has an attachment that allows it to be used with the custom mask (which makes it unique). Anyone who has bought an OO knows it can easily cost over $2000 (and that is without the mask attachment). I also went through a Neuromuscular Bite Registration to establish my optimal bite position. This is the same procedure used to treat TMD (another condition I also have).

Forming a mask to a unique shape is not a simple (or, cheap) procedure. Anyone remotely familiar with “Economies Of Scale” understands the difference between making one item vs thousands. For example, a prototype car may cost $1,000,000+ vs $30,000 from the assembly line.

When I posted my previous thread last October expressing my intent to pursue this procedure, a few folks expressed genuine interest in knowing the results. That is what I have done here. I have been attempting to find an effective and comfortable treatment for my sleep apnea for 11 years. I have tried virtually everything short of Tracheotomy. I could probably write a book on just those efforts. I have boxes of contraptions that I have designed and built on my own (being an engineer helps). I am at the upper scales of severe sleep apnea. I know a few who have it even worse than I and I can empathize with them. Anyone who requires a high CPAP pressure understands the challenges and frustrations of getting a mask to work. I also have to sleep propped up because even though I have had seven sleep studies, no one has been able to determine my CPAP pressure requirement while lying flat. Even if they made a machine that could produce a high enough pressure, I doubt I could tolerate it anyway.

To be perfectly honest, I did not know in advance that my insurance would cover this. I was fully prepared to pay the entire bill from my HSA.

You know, one person with a missing leg may spend $50,000 for a Prosthetic leg (with no guarantee of success), while another may decide to use crutches and spend that money on a car (or whatever, or nothing). It’s a personal choice. If I had known four months ago what I know now, would I pursue this procedure? No, but it is what it is now, and I’m going to make the best of it that I can. Would you pursue this procedure if you knew for sure it would work? I bet for many the answer would be “in a heartbeat”. You want me to say “I’m stupid?” Okay fine, I’m stupid. I made a choice; I took a chance and I’m sharing the results. My motivation was from being serious about my personal health and dedicated to solving a problem with severe consequences. This was the next thing to try. There are no other cheaper or more feasible options that I have not tried.

I will now address the specific questions and comments previously posted in this thread:

As already indicated, the $99 TapPap will not work with a FULL FACE MASK! In fact, I bought one two years ago (although at that time, I paid $179 for the CPAP Pro, which is essentially the same thing). I have tried everything possible to make a nasal mask work. My ONLY solution is a FFM.

Also as already indicated, the name of company (Airway Management) is found at this link:
http://amisleep.com/

I think the reference to “Sleepzzz” was intended to indicate “RemZzz”. I have used these and they are essentially the same as those from Quietus except the latter type has a tacking agent on one side that holds the liner in place. I use Quietus liners with my traditional FFM.

I am not working for this company and have no financial stake in its success. If I were, I’m sure I would be fired by now for being brutally honest. After five nights of attempting to use this mask, I am a bit skeptical that I will be able to get it to work for me although I have tried some more personal modifications and have a couple of ideas for some other options. I know others have benefitted. Of course, there is no one solution that will work for everyone. I have received useful information from the Apnea Board forum, so I am merely attempting to give back.

To take a comment out of context (e.g. about drilling a hole) and extrapolating it into something truly bazaar seems rather pointless, so I don’t know how that is helpful.

What good are 20 to 40 masks if none of them work?! I’ve already tried a least 20 (and did a free trial test on many more at my DME supplier).

And finally, the following items (even if they are in the same cost range as this custom mask assembly) will not treat sleep apnea:

A house purchased decades ago
A tent
"his and hers" outhouses (even with a running creek)
02-24-2014 05:50 PM
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retired_guy Offline

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Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #12
RE: My experiences with a custom-made full face mask
Thanks for clearing all that up Terp.... Yes, you were correct that my reference to Sleepzzz should have been Remzzz. I keep getting that wrong. Latest report on my ffm is that having studied it awhile, I lowered the pressure on my machine to 12, carefully fit the mask on, and took a really super 2 hour nap. Woke up feeling great, and the mask behaved very nicely. That gives me hope for my Quattro ffm, and I do also sincerely hope you get your issues resolved with your mask. Even expensive masks deserve an opportunity to fulfill their destiny.

But dude, seriously? $10 to replace a 50 cent light bulb?

Just kidding Terp. Have a nice day.
(This post was last modified: 02-24-2014 06:10 PM by retired_guy.)
02-24-2014 06:10 PM
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herbm Offline

Preferred Members-2

Posts: 852
Joined: Jan 2014

Machine: ResMed AutoSet S9
Mask Type: Oral
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: ResMed H5i
CPAP Pressure: 11-16
CPAP Software: ResScan SleepyHead

Other Comments: Backup Mask: Innomed Hybrid FFM -- Oral+Nasal Pillows

Sex: Male
Location: Austin, TX

Post: #13
RE: My experiences with a custom-made full face mask
No one said you were stupid, nor even implied that.

It MIGHT be stupid to know the outcome of your experience and pursue it again, or not.

Great artificial legs do far more than the $100 variety, which are themselves marvels of engineering (see the Ted Talk on this.)

The issue was not that someone would knowingly spend $4000 on a MUCH BETTER mask, but that someone would spend a similar sum after knowing it really wasn't ever really right and still leaked badly.

The $10 charge for the light REPLACEMENT is quite fair -- IF AND ONLY If there wasn't an easy way to just pull a $1 module and replace the light AND assembly in 30 seconds.

Fixing the bulb as the only choice, makes the labor worth while, but charging for labor that isn't useful would not be.

Also, it wouldn't be a very good value if the light didn't do what it was designed to to better than the cheap alternative.

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."
02-24-2014 10:35 PM
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terp1984 Offline

Preferred Members

Posts: 45
Joined: Apr 2012

Machine: ResMed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: ResMed Quattro FX
Humidifier: ResMed S9 H5i
CPAP Pressure: EPAP 5 to 15, IPAP 10 to 35
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: South Carolina

Post: #14
RE: My experiences with a custom-made full face mask
Okay, I think I have recovered enough to resume normal posting. I was already extremely distressed from having high hopes about this custom mask and then experiencing these problems, so the perceived put-downs in the posts were really getting to me.

Here are some more updates and information. Take from it what you will (i.e. it is what it is):

The first three nights were already documented in previous posts.

The fourth night, I tried a piece of silicone [commercial link removed by Admin] which I had used on an old hybrid mask two years ago. I cut it to fit the lower chamber (it was too thick for the nasal area). This made a superb seal around my mouth. I used scuba diver mask sealer on my nose. I took an antihistamine at bedtime and then a sleeping pill in the middle of the night. Sleep quality was excellent for seven hours, but again my teeth were sore from the mask being so tight.

The fifth night, I used a piece of Mack’s Earplugs (described on the package as silicone putty). I molded it into a snake and placed it around the mouth area. I also tried a piece in the nasal area, but it was always too thick (even when I severely flattened it out). I spread scuba diver gel in both chambers. The seals were excellent. Again, I took an antihistamine at bedtime and then a sleeping pill in the middle of the night. I had only one apnea event for the entire six hours. But again, I faced the morning with sore teeth.

Last night I took a break and did not use the CPAP. I was tempted to go back to my normal FFM, but I still have a bruise and red sore from that mask pressing onto my nose. The custom mask does not touch that spot so the timing on getting that mask was rather fortuitous (I had already stopped using the CPAP to allow my nose to heal – I even tried using my old nasal pillow mask with my mouth taped shut which did not work before and did not work again).

I originally thought that the tube that holds the mask to the OA was hollow at only one end. I now realize that it is hollow all the way through. I was wondering what this odd whistling sound was and it was air exhaling from my mouth. I plugged the end and that solved that problem.

There are still confusing things about the design. Why are the nasal and mouth chambers not connected? Perhaps it is the design intent to force all the air through the nose. Maybe this is the most efficient way to breath. But if I have nasal congestion, this mask is useless. I am still tempted to drill a hole between the chambers. I could plug it back up if necessary. My only hesitation is that it may void the warranty (my email to the lab was returned as undeliverable - ha, oh well). The hard acrylic is not comfortable. My intuition says I need something flexible pushing against my face. The Mack’s Earplug is flexible but it has virtually no elasticity, so that is not an ideal option. I’m thinking of swim goggles. Some are made of acrylic without any cushions. I tried those and could never get them to seal, plus they were painful. Obviously, they work for some people since they still sell them. The swim goggles that work for me are the ones with the foam cushions. I cannot even get the solid silicone cushions to seal around my eyes.

I’m thinking this type of mask would work well for someone with a lot of skin fat. I don’t mean that in a disparaging way, it’s just a personal, analytical opinion.

I’m also concerned about the need to take a sleep aid to get any sleep with this mask. Although that is what I essentially had to do when I first started using my CPAP and that may be a way to “force” me to get used to this mask, I am even more concerned about the need to make the mask so ridiculously tight that it hurts my teeth.

I’m thinking about buying some thin, foam weather-stripping to see if that will work.

So far, the “common denominators” for each night are:

- The leakage is the biggest challenge.
- The CPAP pressure required is an average of 3 cm/H2O lower (I love this auto-titration machine!)
- The sleep quality is improved, but the duration of sleep is less.
- My teeth are suffering due to the mask being so tight.

I should probably point out that ALL of the medical professionals (DME provider, doctors, sleep technicians, etc.) have insisted that I make my mask way too tight and some leakage is always normal. Perhaps that is so, but I just cannot sleep with a leaky mask no matter how slight. Invariably, it seems that when there is a leak, it blows right into an eye. Under that scenario, I cannot sleep even with the strongest sleeping pill out there. So, my position is, if I can’t sleep, then what’s the point?

It bears repeating, I cannot imagine anyone making a decision to buy or not buy something based on the experiences of just ONE PERSON! When I review a product on Amazon, I read all the reviews and use what is most pertinent to me personally. One of my hopes about this thread is some others else will post their ACTUAL (vs anticipated) experiences.

Even if you think my whole effort is completely ludicrous, having information regarding one’s options is never wasted knowledge.




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02-25-2014 06:18 AM
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terp1984 Offline

Preferred Members

Posts: 45
Joined: Apr 2012

Machine: ResMed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: ResMed Quattro FX
Humidifier: ResMed S9 H5i
CPAP Pressure: EPAP 5 to 15, IPAP 10 to 35
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: South Carolina

Post: #15
RE: My experiences with a custom-made full face mask
While searching the company's site for a manual, I came across this link that shows an excellent picture of the Oral Appliance (or, Oral Orthotic as the case may be for some use):

http://www.glidewelldental.com/downloads/patient/tap-bro.pdf

Although the brochure does not indicate such, that round hole you see in the middle is what allows the tube to attach and then the mask is attached to the tube. The setscrews on each side allow for adjustment of the OA. The setscrews on the mask (not shown, of course) allow for adjustment of the mask onto the face.
(This post was last modified: 02-25-2014 08:58 AM by terp1984.)
02-25-2014 08:55 AM
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herbm Offline

Preferred Members-2

Posts: 852
Joined: Jan 2014

Machine: ResMed AutoSet S9
Mask Type: Oral
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: ResMed H5i
CPAP Pressure: 11-16
CPAP Software: ResScan SleepyHead

Other Comments: Backup Mask: Innomed Hybrid FFM -- Oral+Nasal Pillows

Sex: Male
Location: Austin, TX

Post: #16
RE: My experiences with a custom-made full face mask
You seem to say you can breath through you nose (alone) so why not just try a nasal pillow mask? (about $100 on vendor #1)

I am very fond of the ResMed Airfit P10 (the lightest, quietest, and simplest mask around) and the F & P Pilair gets good reviews.

Vendor #1 was giving free "return insurance" (and free shipping) on the P10.

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."
02-25-2014 10:16 AM
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terp1984 Offline

Preferred Members

Posts: 45
Joined: Apr 2012

Machine: ResMed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: ResMed Quattro FX
Humidifier: ResMed S9 H5i
CPAP Pressure: EPAP 5 to 15, IPAP 10 to 35
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: South Carolina

Post: #17
RE: My experiences with a custom-made full face mask
HerbM, your question leads me to believe that some of my explanations are still highly deficient. Therefore, I will attempt to be as explicitly clear as reasonably possible: While using my CPAP I can in fact breath through just my nose IF AND ONLY IF MY MOUTH IS COVERED.
02-25-2014 10:32 AM
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herbm Offline

Preferred Members-2

Posts: 852
Joined: Jan 2014

Machine: ResMed AutoSet S9
Mask Type: Oral
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: ResMed H5i
CPAP Pressure: 11-16
CPAP Software: ResScan SleepyHead

Other Comments: Backup Mask: Innomed Hybrid FFM -- Oral+Nasal Pillows

Sex: Male
Location: Austin, TX

Post: #18
RE: My experiences with a custom-made full face mask
How about a Hybrid Mask then? Pillow mask with oral component?

I have one arriving this week. There are two (AFAIK) that are available, less expensive one (Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear) according to vendor #1, and the more expensive, ~$250, one from Resmed.

I ordered the cheaper one but mostly due to the REVIEWS since they were both the same price to me ($19) after insurance.

It seems you need a "FFM" but your nose is giving you trouble so anything covering your entire nose isn't going to work (for now at least).

We're getting off the "review" but it seems you really are more in need of some way to ensure you have effective therapy.

The mask is just a tool, not the end goal.

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."
02-25-2014 10:38 AM
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terp1984 Offline

Preferred Members

Posts: 45
Joined: Apr 2012

Machine: ResMed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: ResMed Quattro FX
Humidifier: ResMed S9 H5i
CPAP Pressure: EPAP 5 to 15, IPAP 10 to 35
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: South Carolina

Post: #19
RE: My experiences with a custom-made full face mask
Hybrid Mask? Been there, done that, got the failure.
02-25-2014 11:05 AM
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retired_guy Offline

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Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #20
RE: My experiences with a custom-made full face mask
(02-25-2014 10:32 AM)terp1984 Wrote:  HerbM, your question leads me to believe that some of my explanations are still highly deficient. Therefore, I will attempt to be as explicitly clear as reasonably possible: While using my CPAP I can in fact breath through just my nose IF AND ONLY IF MY MOUTH IS COVERED.
I'm with you on this one Terp.. When I use my nasal mask I have to use a chin strap (which I do not much care for) or I'll create a gale force through my mouth all night. Really hard to sleep through that. But I can use the nasal mask with a chin strap and do fine. Unless I have a head cold or something, such as the last few days.

Then I have to go to my FFM. Like you, I have had a heck of a time getting it to not leak. Using the Remszzzzzzzzzzzzz has helped a lot, but not solved the problem. However, lowering the pressure a little (from 15 to 12) and talking nice to the mask resulted in a successful night last night. Like you, it seems like you have to have the thing cinched up pretty tight for it to seal. I do not like that either.

I have come to the semi-conclusion that I should be using a mask size a hair smaller than the medium I have, and a hair larger than the small size.

While I study on that, I will return to my trusty little nasal mask now that my sinuses are doing better. At least you don't have to tighten that mask up to the nose breaking point in order to get a seal.
02-25-2014 12:32 PM
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