12 years on cpap and it's time to move on.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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SleepingUgly
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Re: 12 years on cpap and it's time to move on.

Post by SleepingUgly » Fri Feb 24, 2012 3:55 pm

There are three things that don't go over well when said on this forum: (1) There are reasonable alternatives to CPAP, (2) Choosing not to use CPAP can be a reasonable choice, and (3) the biggest risk factor for OSA is being overweight.

This never go well.
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Re: 12 years on cpap and it's time to move on.

Post by debtheveg » Fri Feb 24, 2012 4:00 pm

But if there is a reasonable alternative to CPAP, don't you want to know about it???

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Re: 12 years on cpap and it's time to move on.

Post by chunkyfrog » Fri Feb 24, 2012 4:06 pm

Please note the name of this forum.
Until medical SCIENCE comes up with something-ANYTHING-that works BETTER than XPAP, this is the GOLD STANDARD.
So far nothing fits those requirements.
Denial kills.

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Re: 12 years on cpap and it's time to move on.

Post by debtheveg » Fri Feb 24, 2012 4:12 pm

Yeeess ... the name ... so?? This is still related to "talking about CPAP"! And we're talking about something that may be end up being better than CPAP. They have to start somewhere! And you don't know that these implants won't become the GOLD STANDARD in time. I think I know who's in denial here!!

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Cereal Killer
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Re: 12 years on cpap and it's time to move on.

Post by Cereal Killer » Fri Feb 24, 2012 4:39 pm

Jordy wrote:

I don't see him lieing about using software. I don't see anywhere in this post where he says he used software. CK made a statement about people who used software don't fail CPAP after 12 years.
You did not read well enough. Go back and look at page 2. After I challenged him on the software and he did not answer, then NightMonkey asked him if he used the software and Corky said:
I did.
I suspect he was lying about that and other factors leave me not to trust him. But we will see as this develops whether he can build some credibility with the skeptics.

BTW, it takes little effort to build credibility with those who are desperate for a better solution than CPAP. They can easily get sucked into something that is at best a waste for them. At worst I don't want to think about.

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Re: 12 years on cpap and it's time to move on.

Post by BlackSpinner » Fri Feb 24, 2012 4:56 pm

debtheveg wrote:I agree Jordy! I don't know why anyone who dares look for an alternative to CPAP gets attacked ... it's a funny attitude to take! I've had it happen to me before when asking about didgeridoos etc. It would seem that those who love their CPAPs LOVE their CPAPs. Good for them but they needn't be so negative and downright rude and nasty. We should be grateful to Corky and those like him who divulge information from which we can all learn.
Because there are a million snake oil salespeople out there selling products that have no track record.
Most of the valid alternatives will only work for a small range of OSA.

So yes anyone who comes bouncing on without a track record, without data is going to challenged. If you think being challenged to post proof is being attacked then you welcome to go and buy a bridge in Manhattan and some cold fusion reactors.

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The Choker
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Re: 12 years on cpap and it's time to move on.

Post by The Choker » Fri Feb 24, 2012 5:07 pm

Is my OSA/sleep apnea diagnosis a scam?

Postby Corky Lynch on Mon Jan 23, 2012 4:19 pm
Ask yourself, "Of all the people I know who have had the test - has anyone passed without OSA? If the answer is no one try to think of another test with a 100% failure rate (Star Trek's "Kobe Oshi Maru" aside). I took the test twice. First one was inconclusive and the second time I didn't sleep well with all the junk strapped and hooked up to me. Still didn't give in. After a hospital stay (for something else) they said I had OSA and couldn't go home without a CPAP ($140.00) and a home oxygen system ($35.00 per month rent). Used the oxygen for about two weeks then got tired of the damn hose in my nose all the time and tripping (at 68 year old the "Help I've fallen . . . is for real) over the miles of tubing. A month later went back to see a respratorie specialist for a check (standard procedure) and was pronounced as fine and didn't need the home oxygen. I think the problem is the hospital is no pace to get any rest or sleep because they keep coming in to give you pills, take blood (at 4 AM so results will be ready by 8AM for the doctor) and a million other things to destroy your sleep cycle.
viewtopic.php?f=1&t=60072&st=0&sk=t&sd= ... y&start=60

I wonder if this is the same "Corky" coming back a month later to play a little trick? He wasn't too happy the first time he was here and he wasn't received well then either.

Anyone could read about these trials on the internet and fabricate their own little story. The "details" he has given can easily be composed using the information on line.
T.C.

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RocketGirl
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Re: 12 years on cpap and it's time to move on.

Post by RocketGirl » Fri Feb 24, 2012 6:46 pm

debtheveg wrote:Yeeess ... the name ... so?? This is still related to "talking about CPAP"! And we're talking about something that may be end up being better than CPAP. They have to start somewhere! And you don't know that these implants won't become the GOLD STANDARD in time. I think I know who's in denial here!!
Deb (AND Corky),

I think the reason you're getting so much blowback has nothing to do with the experimental procedure, and everything to do with the fact that none of Corky's posts contains any real insight or information. Post after post of basically "I'm going to the doctor again" and promises to fill us in on what the doctors have to say, but then he never does (fill us in). He's giving nothing but a web link, and some teases. No insight, no practical information about the procedure (not even the easy-peasy stuff, i.e. how long did it take? How was the prep? How are you feeling now? How long is recovery expected to take? Do you have restrictions on activity now? What did you have to do to qualify? Are there side effects? Not to mention, why in tarnation is your arm in a sling?)

In other words, he came on cold with a tease about something that many here who have struggled with xpap would find life-transforming if it became widely available, but his subsequent posts have been so informationless and vague that yes, some folks are getting suspicious. Note that we did not call him here, he just showed up with what amounts to an astounding announcement - followed by what comes across as a fairly complete lack of follow-through.

For the record, I'm one of the lucky ones, it seems; I had success with my cpap treatment from day 1, so this procedure doesn't interest me personally, outside of scientific curiousity. But I have seen a lot of other people here who have struggled hard and are still not well, and are still looking and hoping for a solution. You don't dangle a cookie just out of reach in front of a starving man and expect him to be happy about it.

I think if Corky had come back with even ONE post with some real content, the reception would have been much different.

Also for the record, because I wanted to make sure that I was not exaggerating and that I was in fact representing things fairly, here is the sum and total of Corky's posts in this thread:

corky wrote:On 02/17/2012 I went under the knife for my sleep disorder.. trying http://www.inspiresleep.com. it has been 6 months of waiting and test after test after test but got the green light to have the implant put in. I'm a little sore but I know things can only get better. 12 years on cpap has come to a end ( I hope). Fingers crossed!

corky wrote:I'm not a salesman. I'm just a reg. Joe that has been flighting sleep for the passed 20 years and I'm only 40. I had this done in Charleston sc and I was told that was #5 on the list of 10 that will get it. I will let everyone know how this works out. Device will not be turned on for a month.. the dr's want to make sure I've healed well. 3 cuts about 3" long my right side seem to be healing well. But no I'm not a salesman.

corky wrote:How I found out.. http://www.theSTARtrial.com. hope this helps. Or search m.u.s.c inspire sleep. Good luck y'all.

Guest wrote:Go see the Dr's in the morning. Things seem to be healing well. I'll fill everyone in on what they say. Thanks, Corky

corky wrote:Unit is only on at night. I'm told battery will last 10 to 12 years. Vs. 5 to 6 years for devices that are on 24/7 .

corky wrote:About my study at M.U.S.C. http://www.musc.edu/pr/apnea.htm.

corky wrote:Thanks alot deb. Glad the see someone on cpaptalk the has their eyes open. Not so sure why most people on cpaptalk are so hurtful. I've been flighting sleep for over 20 years 12 of those on cpap. I'm only 40 and if this works I'm sure it will add years to my life. ( I hope anyway) . Good luck and please keep me informed on your stuidies. I will keep you up on mine. God bless and take care deb. Corky

corkyd wrote:For the record i'm male

corky wrote:I did.

corky wrote:Can not remember. Sorry

corky wrote:Would you like to go with me? I've got a Dr's app. @ 10:50 tomorrow morning? Maybe he could break it down for ya.?

corky wrote:Seems like C killer is a hater. Don't be a hater!

corky wrote:All is well

corky wrote:I have a 10:50 am app with my Dr in the morning. Fill y'all in after lunch. Night.

corky wrote:Off to the Dr.'s office. 1st time since implant was put in place. Hope to go back to work soon. Still little sore on my right side and about fed up with the arm sling. Full report on my return. Thanks, Corky

http://www.inspiresleep.com

corky wrote:Next Dr visit is in 3 weeks. All is well. You people are not very nice. Some of are but most of you are not.

corky wrote:Went back to work today. Been out a week and everything seems to be healing very well. Still alittle
sore. Gotta be sore before you stop the snore.


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Re: 12 years on cpap and it's time to move on.

Post by corky » Sat Feb 25, 2012 9:09 am

The Choker wrote:
Is my OSA/sleep apnea diagnosis a scam?

Postby Corky Lynch on Mon Jan 23, 2012 4:19 pm
Ask yourself, "Of all the people I know who have had the test - has anyone passed without OSA? If the answer is no one try to think of another test with a 100% failure rate (Star Trek's "Kobe Oshi Maru" aside). I took the test twice. First one was inconclusive and the second time I didn't sleep well with all the junk strapped and hooked up to me. Still didn't give in. After a hospital stay (for something else) they said I had OSA and couldn't go home without a CPAP ($140.00) and a home oxygen system ($35.00 per month rent). Used the oxygen for about two weeks then got tired of the damn hose in my nose all the time and tripping (at 68 year old the "Help I've fallen . . . is for real) over the miles of tubing. A month later went back to see a respratorie specialist for a check (standard procedure) and was pronounced as fine and didn't need the home oxygen. I think the problem is the hospital is no pace to get any rest or sleep because they keep coming in to give you pills, take blood (at 4 AM so results will be ready by 8AM for the doctor) and a million other things to destroy your sleep cycle.
viewtopic.php?f=1&t=60072&st=0&sk=t&sd= ... y&start=60

I wonder if this is the same "Corky" coming back a month later to play a little trick? He wasn't too happy the first time he was here and he wasn't received well then either.

Anyone could read about these trials on the internet and fabricate their own little story. The "details" he has given can easily be composed using the information on line.

Wrong person. That is not me.

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Re: 12 years on cpap and it's time to move on.

Post by Kody » Sat Feb 25, 2012 9:39 am

SleepingUgly wrote:There are three things that don't go over well when said on this forum: (1) There are reasonable alternatives to CPAP, (2) Choosing not to use CPAP can be a reasonable choice, and (3) the biggest risk factor for OSA is being overweight.

This never go well.



Your right, any of the above will usually invoke plenty of responses.
Complex Sleep Apnea

corky
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Re: 12 years on cpap and it's time to move on.

Post by corky » Sat Feb 25, 2012 9:42 am

I will try to clear my name here. (1) I never came here to "bash" CPAP in anyway.(2) I've had had many machines for many years.. Some worked better than others. (3) I am a salesman (I sell lumber) BUT I'm not a implant/CPAP salesman. (4) I'm a 40 yr old white male that lives in Charleston SC married for 11 years and we have a 8yr old girl. I'm middle class ( border line below middle class like everyone else around here). I found out about the inspire treatment 8 months ago. Dr. Gillespie @ MUSC is my ENT Dr. If I knew how to post pics to this site I would post te pics of the 3 cuts I have ( my throat, right breast , and stomach) how ever I don't know if posting pics to this site is possible. The arm sling was used to keep me from using my right arm. That's all. After my last Dr visit I'm now aloud to move around freely ( as long as I don't pick up anything over 20 pounds). I do have some pain in the morning and late night but other than that I feel great. My next visit to the dr. is in 3 weeks. Not so sure what they will do. I was told 3 more sleep studies in the next 3 months so they can "dial in" my implant.Before I go one last story. When I was 15 (1987) I got a call that my dad passed away in his sleep (he was 44). They never really said what killed him so they believe it was a brain aneurysm. Who knows? I'm not taking that chance. If this adds years to my life I'm all for it. If not at least I can say I tryed. I'm not trying to get into anyones "click" around here I'm just trying to tell my story..

Everyone have a great weekend

Corky D.

Charleston SC

corky
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Re: 12 years on cpap and it's time to move on.

Post by corky » Sat Feb 25, 2012 9:55 am

Please read this story.. This is not me but it's the same implant,same dr, and the same story as mine..

Thanks, Corky

http://www.postandcourier.com/news/2011 ... ier/?print

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Pugsy
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Re: 12 years on cpap and it's time to move on.

Post by Pugsy » Sat Feb 25, 2012 10:52 am

If I was 40 years old again and there was a chance that I could do without the machine for the rest of my life...would I opt to be an experimental guinea pig? You bettcha. In a heart beat.

Back when cpap machines were the new way of treating sleep apnea and not much more advanced than leaf blowers some people had to be the first ones to try the damn things. For any new medical device or procedure to become the norm someone has to be the guinea pig.

Fortunately I have adjusted fairly well to the machine and overall I am content with this therapy so I have no burning desire to be free of the machine but that's not to say that should the implants become more and more proven alternative to the cpap machine that I would pass up the chance to give it a try should I ever have the chance.

So to Corky...good luck to you and whatever your reasons for opting for the implant over the cpap machine is just fine in my book. The fact that you wanted it...is enough. The fact that anyone just plain wants to try it is enough reason to try it should they meet the other criteria needed to stand a chance of having success.

It sort of sounds rather barbaric but I just imagine that the first cpap leaf blowers were also considered to be rather barbaric to the masses way back when they were first offered.
Some people make good pioneers and some people don't. For those that don't want to be a pioneer we shouldn't put up road blocks for those that do want to be pioneers.

I was a bit surprised over the negativity shown here. I have seen more compassion shown to known idiot trolls than I have seen here. Spam for the website? Hey, it's not like we can just go order up one of these things and they are wanting to make a truckload of money from the online orders.

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Re: 12 years on cpap and it's time to move on.

Post by RocketGirl » Sat Feb 25, 2012 12:16 pm

corky wrote:I will try to clear my name here. (1) I never came here to "bash" CPAP in anyway.(2) I've had had many machines for many years.. Some worked better than others. (3) I am a salesman (I sell lumber) BUT I'm not a implant/CPAP salesman. (4) I'm a 40 yr old white male that lives in Charleston SC married for 11 years and we have a 8yr old girl. I'm middle class ( border line below middle class like everyone else around here). I found out about the inspire treatment 8 months ago. Dr. Gillespie @ MUSC is my ENT Dr. If I knew how to post pics to this site I would post te pics of the 3 cuts I have ( my throat, right breast , and stomach) how ever I don't know if posting pics to this site is possible. The arm sling was used to keep me from using my right arm. That's all. After my last Dr visit I'm now aloud to move around freely ( as long as I don't pick up anything over 20 pounds). I do have some pain in the morning and late night but other than that I feel great. My next visit to the dr. is in 3 weeks. Not so sure what they will do. I was told 3 more sleep studies in the next 3 months so they can "dial in" my implant.Before I go one last story. When I was 15 (1987) I got a call that my dad passed away in his sleep (he was 44). They never really said what killed him so they believe it was a brain aneurysm. Who knows? I'm not taking that chance. If this adds years to my life I'm all for it. If not at least I can say I tryed. I'm not trying to get into anyones "click" around here I'm just trying to tell my story..

Everyone have a great weekend

Corky D.

Charleston SC
Hi Corky - thanks very much for the additional information in this post, and for the one with the link to the newspaper story. Appreciate you taking the time to respond. You answered some of my questions, including one I didn't ask, which was "How will they protect you, how will they ensure that they know that this worked?". Three follow-up sleep studies ought to be enough to both dial in the device and hopefully to assess its efficacy for you.

I think that one of the comforting things about cpap is that each user can, if they wish (and if their machine supports it), check their data daily or weekly and see exactly how many events they are still having. I don't think I'd be at all successful in sticking with cpap if I couldn't see my data when I want to. With this device, will you have any options, long-term once the trial is over, for being sure that the implant continues to give you the effective treatment you need?

I hear you on the situation with your father. Mine had a massive stroke in his early 40's. That was in the 1960's and the reason was never stated, but as he was a championship snorer known to stop breathing and then snort awake, I think it's pretty clear what it was. My sister later had the same thing happen with the same results. I never snored, but family history was one of the key things that motivated me to get tested and to accept the need for treatment.

Good luck as things progress - it would be a wonderful thing indeed if this treatment is helpful (to you, and eventually to others).

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Re: 12 years on cpap and it's time to move on.

Post by chunkyfrog » Sat Feb 25, 2012 12:23 pm

It is probably wrong for us to discourage someone who is trying to get help--even experimentally.
If and when these products are available to the 'regular Joe'--not just the lucky or rich few,
I still wonder about the track record of the company wanting to sell these implants:
I understand they would have a monopoly for several years--maybe indefinitely.
Even without monopoly status, many other medical device companies have been in the news--toxic breast implants,
bad insulin pumps, defective hip joints, cardiac pacemakers, implanted defibrillators (my MIL died while hers was NOT working)
So much money is involved in the use of these various devices, the temptation to cheat becomes irresistible--and penalties . . .

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