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

General Discussion on any topic relating to CPAP and/or 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 1:06 pm

Thanks everyone!

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

Post by Lizistired » Sat Feb 25, 2012 3:05 pm

Corky, I quit reading this thread on page 2 but, I wish you the best and hope you will keep us updated despite the responses you have recieved here.
This procedure is not something I think I would be interested in but I have only been at this for a little over a year.

I guess this forum has become a bit troll weary. It sad to see posters attacked here of all places.
It's rare to see a member DEMAND answers and explanations here.
cereal killer is the troll and I don't know why she has credibility here and others have piled on. Sometimes it takes time for these things to play out. sigh.
Best of luck.

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

Post by NightMonkey » Sat Feb 25, 2012 8:17 pm

chunkyfrog wrote:It is probably wrong for us to discourage someone who is trying to get help--even experimentally.
I don't think Corky was discouraged and I doubt he could have been discouraged by anonymous comments on a CPAP forum.

I also think vetting of new members or guests is an appropriate function. We have been taken off on tangents by trolls many times.


chunkyfrog wrote:I still wonder about the track record of the company wanting to sell these implants:
They have no track record to speak of. This is experimental.



chunkyfrog wrote:I understand they would have a monopoly for several years--maybe indefinitely.
Inspire has competition. Apnex is testing a similar concept.

Monopolies don't last indefinitely. Patents expire. Competition, substitute products come along quickly.

Temporary monopolies are a good thing for the consumers. They are part of what attracts companies to risk their money on ventures such as this.

chunkyfrog wrote: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)
Only the bad ones make the headlines. You don't hear about the tens of millions that work well. (Sorry about your MIL).
So much money is involved in the use of these various devices, the temptation to cheat becomes irresistible
Cheating is part of the human condition. Minimum wage workers, ministers, social workers, college professors, businessmen, engineers, panhandlers all have their cheaters among them. You can cite examples.

Sorry chunky, I usually agree with you.
Last edited by NightMonkey on Sat Feb 25, 2012 8:24 pm, edited 1 time in total.
NightMonkey
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NightMonkey
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Re: 12 years on cpap and it's time to move on.

Post by NightMonkey » Sat Feb 25, 2012 8:23 pm

corky wrote: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

About the dude in the story it says,
Schweitzer, for example, had used the mask (for 16 years?) but said his case has become so severe that it is no longer effective.
Poor guy. If CPAP will not hold his airway open I cannot imagine that the Inspire device is good enough to do it.

Or was Schweitzer without the software and failing to tweak good CPAP settings????
NightMonkey
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avi123
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Re: 12 years on cpap and it's time to move on.

Post by avi123 » Sat Feb 25, 2012 8:26 pm

Corky, before deciding on doing it have you spoken with others who have done it?

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2 B Sleeping Soundly
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Re: 12 years on cpap and it's time to move on.

Post by 2 B Sleeping Soundly » Sat Feb 25, 2012 8:31 pm

avi123,

I know it is a long thread so it is easy to miss, but I believe he has already had the procedure and is in the process of recovery.

John

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

Post by debtheveg » Sun Feb 26, 2012 12:54 am

He has ... about a week ago. And that is why I've been making enquiries as I'm in the early stages of going down the same track with the Apnex device. I would love to know of more people that have undertaken this procedure but of course, being so new, there aren't that many guinea pigs around.

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

Post by corky » Sun Feb 26, 2012 11:14 am

I was told that I'm #4 in Charleston. 2 more are set for next month. Charleston will have 6 total. 90 people in the u.s. and a total of 150 in the world.

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

Post by Lizistired » Sun Feb 26, 2012 12:40 pm

Sleep2Die4 wrote:
blakepro wrote: this whole thing seems incredibly fake to me.

I think Corky made up the parts about using CPAP for 12 years and using the software. If he used the software he would have been able to answer the questions about the data. (If he used the software he probably would not have been a CPAP failure.)

Credibility on a forum is important. Right now Corky has none with me.

But I think it is OK that debtheveg swallows Corky's meatless story because diversity of opinion often leads to a good discussion.
Good discussion? Where?
Corky doesn't owe you data or an explanation. It's a legitimate trial program. If you are not interested, move on.
Why is this forum in attack mode lately?

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

Post by corky » Sun Feb 26, 2012 1:40 pm

They hate me for some reason.

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

Post by chunkyfrog » Sun Feb 26, 2012 1:44 pm

Nightmonkey--as far as only the bad devices getting in the news, maybe they are only a small percentage;
but to the individuals concerned, it is very significant--especially when so many claim to be ignored.
We knew the model of my mother-in-law's implant (a Medtronics product) had problems within a few months of installation--
yet they left it in over 3 years. Know also, that many of the settlements for deadly automotive defects were issued
with binding non-disclosure agreements (a common trick to silence bad press).
Those individuals who go public with bad med devices are likely to forgo any kind of settlement with the manufacturer.
Still, if it were a last resort, I too might consider some of the best science has to offer--
but I would hope to have a chance to do the research to get the safest, most effective product.
It doesn't bother me so much that so much of what we buy is trash--but we do expect some QC with stuff upon which our lives depend.

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

Post by trytryagain » Sun Feb 26, 2012 3:24 pm

For what it's worth, I believe corky. Myself, I was diagnosed almost 2 years ago. I have been completely compliant, use my software, follow up with Dr. and I have gotten use to living with my machine. I probably have had 20 different masks, and now pretty much use my Swift FX and Quattro FX exclusively. That said, the thought of LIVING the rest of my life using a cpap machine is depressing. I won't stop the therapy unless something better comes along. I would consider surgery in a heartbeat.

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

Post by corky » Sun Feb 26, 2012 4:47 pm

Thanks trytry.

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

Post by Passiflora » Sun Feb 26, 2012 7:04 pm

This device sounds interesting. Thanks for posting on your experiences corky. We are lucky to learn directly from a participant in the study. From what I have read, with Upper Airway Resistance Syndrome (my problem), palatal/pharyngeal discrimination and the ability to detect and prevent an impending obstruction during sleep is intact. In obstructive sleep apnea, the nerves are not as sensitive, sustaining possible damage from years of vibratory snoring. So, it seems that this device wouldn't help someone like me. If the device merely restores stimulation that has been lost, I'm wondering how well it will work. UARS is an absolutely exhausting condition and I wonder if this device will just move someone from OSA to a UARS diagnosis - in effect not working.

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

Post by NachtWürger » Sun Feb 26, 2012 9:37 pm

Passiflora wrote: I wonder if this device will just move someone from OSA to a UARS diagnosis - in effect not working.
To date it mostly hasn't gotten trial participants out of the OSA stage. It is achieving roughly a 50% reduction in AHI. There are a small number of outliers who show no improvement or who are treated to AHI < 5.0.

But you do raise an interesting question about leaving an UARS component.

Time, money, and more guinea pigs will tell.