Anyone hear of this new treatment?

[Kahfree]

http://www.imtheramedical.com/index.php

I sent off my name and number to these people to see if maybe it can help me, since after two sleep studies, I am still unable to keep the mask on during an entire nights sleep. I yank it off and do not recall doing so. It has been 7 months since diagnosis and still, my doctor is unsure what to do about my mask removal. I am 100% compliant in USAGE, but in hours, there is no compliance as I am barley on the machine more than 2.5 hours a night.

So...thoughts on the above link information?

Kelly

[Breathe Jimbo]

I would not want to be one of the guinea pigs because this involves surgical implantation of a device and wire(s) to stimulate a nerve for your mouth/throat/tongue area. Also, IIRC, you cannot have a pacemaker if you have one of these. Family history may be relevant to the latter consideration.

Try taping your mask to your cheeks so that you wake up when you pull the mask off. Others can recommend specific types of tape, like 3M surgical tape for sensitive skin. Or you could try putting a PapCap on over the headgear. I believe there may be a new version of the PapCap that replaces the headgear for some masks; this would make it essentially impossible to remove the mask without waking up.

CPAP is much less invasive that any available surgery, including this new, experimental one.

Do you need a full face mask? Nasal pillows may be easier for you to tolerate and less likely to be ripped off in your sleep. Even if you open your mouth when asleep, many people here have overcome that problem with various clever ideas. BTW, IIRC, the new PapCap version that replaces headgear may not be designed for nasal pillows, so you might be better off experimenting with the regular one. Even better, find the PapCap web site and read up, so that you make the right choice if you eventually go that route.

[Otter]

I think I'd try some sort of restraints before I had wires surgically implanted to shock my throat while I slept. It might be worth it, but it sounds like a last resort to me.

[justbreathe]

I would try some kind of restraints to keep my hands away from my face before going for the surgery. Try meditation with this mantra. "My mask is my friend"

[TalonNYC]

Well, once it is out of the trials phase and there's some documentation that it'll actually work - and safely - then there's not much difference between this and a pacemaker. Both provide small amounts of electrical energy to a muscle system to make it do what it's supposed to do.

However, while it is still in the experimental phase, I'd steer clear. I'd pretty much promise that the design will change during the trials, so you want to wait for the true 1st generation public product.

That being said, try mittens until they're done with the study - might work =)

[codinqueen]

Since this sounds experimental up to this point, if you have health insurance, be aware they will probably not pay for this surgery or the device itself. I echo the same comments others have, and I believe you just haven't found the right mask yet. About 10 years ago, I was diagnosed with sleep apnea and prescribed CPAP, which I failed, because back then, the mask choices were limited. I actually opted for surgical "fix" for OSA, which although very painful, did not help after about 6 months out. Now there are plenty of masks to choose from, and I suggest you try the Swift Fx nasal pillow system which is very unobtrusive and far easier to wear. I use one and find it very comfortable and I don't yank the mask off at all now. You just have not found the ideal mask for you yet. Keep trying, you will find it, if you try others, with perseverance. Good luck, I hope you find one sooner rather than later. I'm a believer and you can be too!!!

[kempo]

http://www.imtheramedical.com/index.php

I sent off my name and number to these people to see if maybe it can help me, since after two sleep studies, I am still unable to keep the mask on during an entire nights sleep. I yank it off and do not recall doing so. It has been 7 months since diagnosis and still, my doctor is unsure what to do about my mask removal. I am 100% compliant in USAGE, but in hours, there is no compliance as I am barley on the machine more than 2.5 hours a night.

So...thoughts on the above link information?

Kelly

Kelly, have you tried strapping weights to your wrist? Soft weights, the kind people strap to their wrist and ankles when they work out. They would need to be heavy so it would be difficult to move your arms and hands up to remove your mask.

I would not try the experimental surgery.

Good luck.

[Goofproof]

Well, once it is out of the trials phase and there's some documentation that it'll actually work - and safely - then there's not much difference between this and a pacemaker. Both provide small amounts of electrical energy to a muscle system to make it do what it's supposed to do.

However, while it is still in the experimental phase, I'd steer clear. I'd pretty much promise that the design will change during the trials, so you want to wait for the true 1st generation public product.

That being said, try mittens until they're done with the study - might work =)

If I could go for a mask and air pump to keep my heart running instead of a pacemaker, I think I'd go with air injection to keep my heart paced. I'd say big difference a XPAP is the Gold Standard for treatment. It does however require effort and a positave frame of mind. The one thing CAN'T, is good for is stopping progress. Jim

[moresleep]

http://www.imtheramedical.com/index.php

I sent off my name and number to these people to see if maybe it can help me, since after two sleep studies, I am still unable to keep the mask on during an entire nights sleep. I yank it off and do not recall doing so. It has been 7 months since diagnosis and still, my doctor is unsure what to do about my mask removal. I am 100% compliant in USAGE, but in hours, there is no compliance as I am barley on the machine more than 2.5 hours a night.

So...thoughts on the above link information?

Kelly

I would say, if you qualify for a clinical study, go for it. Why not? Unlike many of us, CPAP is not working at all for you, so it is hardly your "gold standard." Artificial stimulation of the muscles that are supposed to keep the airways from closing probably is the future. Of course, we don't know that this company's solution is quite there, yet. But, even if not, you should learn more about your particular condition, which is good.

Otherwise, there are CPAP machines with alarms that will sound if the mask is removed. If the alarm is enough to wake you up, that might be a solution; and you might be able to train yhourself to leave the mask alone.

[Kahfree]

Thank you to everyone who checked out that information. I guess it is scary to try something experimental, but at some point, there has to be a different solution than sleeping with a mask. As medical technology progresses, and Sleep Apnea is more and more talked about, there will be new technologies that will enable people to have more solutions. I think that a lot of people may be afraid of trying something new. Yes, its surgery and there are risks in surgery, so unless a person is prone to surgical complications due to current health condition, I would also stay away from it.

I would like to know more about the procedure. To me, a simple jolt to keep the obstruction away might seem easier to live with than the mask...HOWEVER, I have no clue to what extent that jolt is. Painful? Semi Painful, or no pain or discomfort. I would never consider surgery unless I was totally comfortable with the choice and the risks vs benefits. I also agree that things change in a study and when they perfect it, that's when the new and better equipment comes out, so being the first to get it is usually dumb, but someone has to try it.

As for my taking off the mask, its in pieces on the floor each morning. I hear that an alarm may help, but to be honest, I might just shut off the alarm and go back to sleep. I like the idea of the weights, and may try that. I cant tape my mouth shut, I have issues with suffocation and the feeling of a loss of control. I put the mask on and I am off to sleep in no time so I am not afraid of it and have adjusted to the air streaming inside my nostrils, however, once deep in sleep it comes off. There HAS to be a reason. I am going to have my daughter set her video camera up and turn on the night vision to record my sleep. I need to SEE what is happening.

Thanks everyone...and lets hope tonight I sleep with the mask 5 hours!

Kelly

ps I am using the Swit FX for her. I love it and feel its the best choice at the moment for me. I also use a chin strap.

[Otter]

Kelly, have you tried strapping weights to your wrist? Soft weights, the kind people strap to their wrist and ankles when they work out. They would need to be heavy so it would be difficult to move your arms and hands up to remove your mask.

If I tried that I'd probably wind up slugging myself in the face.

[dsm]

Thank you to everyone who checked out that information. I guess it is scary to try something experimental, but at some point, there has to be a different solution than sleeping with a mask.

<snip>

As for my taking off the mask, its in pieces on the floor each morning. I hear that an alarm may help, but to be honest, I might just shut off the alarm and go back to sleep.

<snip>

Kelly

<snip>

Kelly

If you can find an SDB therapy that works and that isn't xPAP based, and is *proven*, please please let us know here - there are millions across the world who would love to hear your 1st hand experience of such success. Until then, be wary of any claims of solutions that aren't widely recognized. Promises are easier to make than effective solutions. Dreamers will always dream.

If in fact your sole issue is the mask, then that becomes a choice between wearing the mask or wearing the consequences (of your SDB condition). As much as I battle with those masks, they beat the condition hands down.

Good luck in your quest.

DSM

[sister]

Hi Kelly,
I just really know that you haven't found the perfect mask for you yet. I went through so much for 5
years,had the surgery,almost gave up,and then finally a few months ago I fell in love with the swift fx for her! Think of it as your best friend and each night as you put it on thank GOD that we have something that can help us.
Really it took me years to accept the fact that this mask and machine were my friends.
I have a lot of medical problems so that makes it much harder but I have accepted the mask now and that's really all it takes.
Find the right one for you and hang on, giving it every chance.I think if you can accept it as your friend you'll stop taking it off.
No, I still don't like the idea of having to do this for the rest of my life but I have accepted it.
Lot's of luck to you and I'll be praying that you win this battle.
No, I would not have any more surgery,it has made me much worse than I was.
GOD BLESS YOU!

[Mary Z]

Sounds like the implant may be the right choice for you. Perhaps you can get into a clinical trial. I'm not sure how they find the correct voltage required to keep your airway open so this may require multiple sleep studies to fine tune and be sure it's working. I think the suggestion to let the therapy become more mainstream- to let them work the bugs out- is a sound idea. In the meantime while you wait to hear from them you got some good suggestions for working with the mask. Keep us posted on what happens, please.

[chunkyfrog]

I understand the pacemaker device is installed and works much like a heart pacemaker.
Like T.E.N.S., the voltage is adjusted to a range just below sensory awareness, but enough to provide muscle responses.
My thought: it is a delicate adjustment, that may not be possible on all patients.
I have heard it will be very expensive, once approved.