Replies to This Discussion

Permalink Reply by Tim on March 17, 2010 at 6:52pm

Carl, the current treatment choices for people with severe OSA are to become compliant with CPAP or get a trach., and my choice was to become compliant with CPAP. For most people, becoming compliant with CPAP requires motivation and determination, and many people give up -- they do not make a choice, they give up. Many people wish for an easier treatment for OSA, and someday an easier treatment method might be found. I have made my peace with CPAP because I don't want a trach.

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Permalink Reply by Brian Smith on March 17, 2010 at 7:45pm

I have 100% compliance - my last check revealed 379 days out of 379 usage - but my CPAP is only a partial answer in that I can function with it but can't without.

Functioning is the key word; I am not fullly or even adequately rested, I still have headaches, dry mouth and some days, episodes of pressing need to sleep.

But without the CPAP everything is so much worse.

I have absolutely no idea why CPAP isn't a better answer and even less idea, if that's possible, as to where I might go for help. So I just take it for what it is and try not to obsess about it.

One day, there will be a better answer. (I've always thought a vacuum generating bandage worn on the outside of the jaw and throat would be a better, less invasive solution than a m/c blowing air into me but nobody makes one, yet...). And when it arrives I hope I find out about it!

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Permalink Reply by Carl on March 17, 2010 at 8:02pm

No, I don't think straight CPAP is all there is.

Have you even looked at, heard of, or tried the newer ASV machines (I say "newer" because they've been approved for insurance since 2006)? ASV will drop the pressure greatly when you are breathing normally, track your normal respiration, then kick in when it detects a cessation of breathing.

And before someone says "ASV is just BiPAP", while the principle is the same, the fact that it doesn't run at such high pressures all the time, adapts to YOUR breathing rate, and only kicks in when you drop below 90% of your normal rate makes me hopeful that I won't end up waking up and gagging like I did with the BiPAP trial.

Tim said:

Carl, the current treatment choices for people with severe OSA are to become compliant with CPAP or get a trach., and my choice was to become compliant with CPAP. For most people, becoming compliant with CPAP requires motivation and determination, and many people give up -- they do not make a choice, they give up. Many people wish for an easier treatment for OSA, and someday an easier treatment method might be found. I have made my peace with CPAP because I don't want a trach.

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Permalink Reply by RockRpsgt on March 17, 2010 at 11:04pm

Carl said:
"And before someone says "ASV is just BiPAP", while the principle is the same, the fact that it doesn't run at such high pressures all the time, adapts to YOUR breathing rate, and only kicks in when you drop below 90% of your normal rate makes me hopeful that I won't end up waking up and gagging like I did with the BiPAP trial."

Good luck Carl. I wish that I was running your study.

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Permalink Reply by Jenny Foerst on March 18, 2010 at 8:05pm

My doctor and provider are the unmotivated ones, and uneducated to the extent that I made myself in an afternoon and a half. Personally, I agree with Brad; OSA is a simple, physics problem, and why there isn't more being done to find a surgical solution that is more or less failsafe, I don't know. I do know there is a surgeon at Duke who has cured OSA--severe--in two people in my office by, in essence, performing several surgeries at once. Both of these people say it hurt like hell to do this, but they'd do it a second time in a heartbeat to feel as good as they do now and never have to sleep with a device roosting on their face all night, every night, ever again. This doctor pretty much gives everyone the same treatment and says he "cures" the apnea--he sure did with the two people I know. Secondly, my migraine doctor discovered I have Hashimoto's thyroiditis, which has implications for OSA. The tissues in the palate and throat swell with this diseasea process; treatment alleviates the swelling. My doctor believes my apnea will go away with sufficient thyroid treatment. Interestingly, since I've been on just a somewhat subtherapeutic dose of thyroid, I have started pulling my CPAP mask off while I'm asleep, without memory of having done so. The remarkable thing is that I wake up with the mask on the floor, but I'm reasted and I've dreamed!! So I'm wondering . . .

Tim said:

I am sure that some number of people who are new to CPAP have problems that are not corrected by their CPAP and some number of people have problems, such as ill fitting masks or mouth breathing, that need to be addressed. From reading posts in apnea forums, it seems that a number of people lack the motivation or determination needed to become compliant with CPAP. I have heard that something like 50% of people who are provided with CPAPs give up on them -- that is a whole lot of unmotivated people.

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Permalink Reply by Tim on March 18, 2010 at 8:20pm

The Stanford surgeries do dramatically reduce the AHI of some number of patients. They are not "cures" and they are not universally effective; I would also like to see how many are still effective after five years. I have also had an MMA with a few other things, and a UPPP. I know how painful the surgeries are -- and I still have apnea.

Properly set up and used, CPAPs dramatically reduce the AHI of virtually all patients who are compliant with them, and they retain their effectiveness long-term. I find CPAP to be very much less painful and intrusive than the MMA and UPPP.

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Permalink Reply by Kathleen G on March 18, 2010 at 8:22pm

For me, this has been the most frustrating physical problem I've ever had, mainly because I can't seem to find a mask that will work for me, without leaving sore marks on my forehead and the bridge of my nose. And then there was the gel one that just wouldn't stay where I told it to! That just continuously blew air into my eyes.

I didn't expect a quick fix since I have several maladies that are not going to go away and all I can do is hope to keep them under control. But what does drive me crazy is that there's a go-between, a RT who's very nice and says I should keep coming back until I find a comfortable mask, but despite that, I hate to bother him. I really feel like a moron.

So even though we do live in a society of quick fixes, I didn't expect one. I did think I'd have a mask by now, however.

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Permalink Reply by Mary Z on March 19, 2010 at 11:17am

Kathleen, use that RT until you find a comfortable mask. I have used my DME to the point that my roommate says I can't call him anymore, I'm a pest. LOL. I have to say he has gone out of his way to try me with different masks, I have big issues with the skin of my nose breaking down to the point I had to take 19 days off to let it heal. Pad-a Cheek makes a product that fits over the forehead piece and then down over the bridge of the nose. I didn't find the piece over the bridge of the nose effective, but the forehead pad helped. Mack's silicone ear plugs can also be molded to pad the bridge of the nose, you can also use bandaids, moleskin, duoderm (buy one piece until you try it, it's expensive, amazon sells it by the piece) and there is also a comfort gel pad available from on line cpap suppliers. Please don't let this get out of hand. Part of the reason I think my DME is so accessible right now is that he realizes he should have been more aggressive when the problems with my nose would not resolve. You are not a moron. None of us are who are serious about our treatment and want to get it right. I think the mask rates high on the list of cpap difficulties. Also your pressure if high, can make mask success difficult.
Good luck,
Mary Z.

Kathleen G said:

For me, this has been the most frustrating physical problem I've ever had, mainly because I can't seem to find a mask that will work for me, without leaving sore marks on my forehead and the bridge of my nose. And then there was the gel one that just wouldn't stay where I told it to! That just continuously blew air into my eyes.

I didn't expect a quick fix since I have several maladies that are not going to go away and all I can do is hope to keep them under control. But what does drive me crazy is that there's a go-between, a RT who's very nice and says I should keep coming back until I find a comfortable mask, but despite that, I hate to bother him. I really feel like a moron.

So even though we do live in a society of quick fixes, I didn't expect one. I did think I'd have a mask by now, however.

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Permalink Reply by Kathleen G on March 20, 2010 at 9:28pm

Mary Z said:

Kathleen, use that RT until you find a comfortable mask. I have used my DME to the point that my roommate says I can't call him anymore, I'm a pest. LOL. I have to say he has gone out of his way to try me with different masks, I have big issues with the skin of my nose breaking down to the point I had to take 19 days off to let it heal. Pad-a Cheek makes a product that fits over the forehead piece and then down over the bridge of the nose. I didn't find the piece over the bridge of the nose effective, but the forehead pad helped. Mack's silicone ear plugs can also be molded to pad the bridge of the nose, you can also use bandaids, moleskin, duoderm (buy one piece until you try it, it's expensive, amazon sells it by the piece) and there is also a comfort gel pad available from on line cpap suppliers. Please don't let this get out of hand. Part of the reason I think my DME is so accessible right now is that he realizes he should have been more aggressive when the problems with my nose would not resolve. You are not a moron. None of us are who are serious about our treatment and want to get it right. I think the mask rates high on the list of cpap difficulties. Also your pressure if high, can make mask success difficult.
Good luck,
Mary Z.

Kathleen G said:

For me, this has been the most frustrating physical problem I've ever had, mainly because I can't seem to find a mask that will work for me, without leaving sore marks on my forehead and the bridge of my nose. And then there was the gel one that just wouldn't stay where I told it to! That just continuously blew air into my eyes.

I didn't expect a quick fix since I have several maladies that are not going to go away and all I can do is hope to keep them under control. But what does drive me crazy is that there's a go-between, a RT who's very nice and says I should keep coming back until I find a comfortable mask, but despite that, I hate to bother him. I really feel like a moron.

So even though we do live in a society of quick fixes, I didn't expect one. I did think I'd have a mask by now, however.

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Permalink Reply by Kathleen G on March 20, 2010 at 9:28pm

Kathleen G said:

Mary Z said:

Kathleen, use that RT until you find a comfortable mask. I have used my DME to the point that my roommate says I can't call him anymore, I'm a pest. LOL. I have to say he has gone out of his way to try me with different masks, I have big issues with the skin of my nose breaking down to the point I had to take 19 days off to let it heal. Pad-a Cheek makes a product that fits over the forehead piece and then down over the bridge of the nose. I didn't find the piece over the bridge of the nose effective, but the forehead pad helped. Mack's silicone ear plugs can also be molded to pad the bridge of the nose, you can also use bandaids, moleskin, duoderm (buy one piece until you try it, it's expensive, amazon sells it by the piece) and there is also a comfort gel pad available from on line cpap suppliers. Please don't let this get out of hand. Part of the reason I think my DME is so accessible right now is that he realizes he should have been more aggressive when the problems with my nose would not resolve. You are not a moron. None of us are who are serious about our treatment and want to get it right. I think the mask rates high on the list of cpap difficulties. Also your pressure if high, can make mask success difficult.
Good luck,
Mary Z.

Kathleen G said:

For me, this has been the most frustrating physical problem I've ever had, mainly because I can't seem to find a mask that will work for me, without leaving sore marks on my forehead and the bridge of my nose. And then there was the gel one that just wouldn't stay where I told it to! That just continuously blew air into my eyes.

I didn't expect a quick fix since I have several maladies that are not going to go away and all I can do is hope to keep them under control. But what does drive me crazy is that there's a go-between, a RT who's very nice and says I should keep coming back until I find a comfortable mask, but despite that, I hate to bother him. I really feel like a moron.

So even though we do live in a society of quick fixes, I didn't expect one. I did think I'd have a mask by now, however.

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