Old 09-01-2015, 12:09 PM #1 (permalink)
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Default DPS Surgery Discontinued at Duke

We're at Duke for our quarterly clinic appointment and just learned that they've stopped doing the DPS surgery here. Apparently a study out of England showed that people who have the surgery are not living as long as those who don't. They don't know if it's the pacer wearing out the diaphram or the stress of the surgery, but they won't putting any more in here until they figure it out.

Well, that's one target we can stop worrying about, I guess.
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Old 09-01-2015, 12:23 PM #2 (permalink)
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Default Re: DPS Surgery Discontinued at Duke

Wow, sorry to hear that. Very disappointing for so many I'm sure.
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Old 09-01-2015, 02:16 PM #3 (permalink)
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Default Re: DPS Surgery Discontinued at Duke

There's a trial in France where they're doing surgery on ALL volunteers, even though only some are getting the DPS. It's truly a "blind" study. Wow, that takes commitment--to go through the surgery and not even get the DPS, and not even know if you did or didn't. But that will be one way they learn.

So sorry for those who were looking forward to it with such hope. We were at one time, till the phrenic nerve testing. Next stop, retigabine we hope.
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Old 09-02-2015, 09:38 PM #4 (permalink)
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Default Re: DPS Surgery Discontinued at Duke

Becky, there's a thread on the research forum about the UK findings, with a link to the paper.
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Old 09-03-2015, 10:25 AM #5 (permalink)
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Default Re: DPS Surgery Discontinued at Duke

I don't know how they can do a blind study because you can feel the pacer working.
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Old 09-03-2015, 10:25 AM #6 (permalink)
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Default Re: DPS Surgery Discontinued at Duke

I don't know how they can do a blind study because you can feel the pacer working.
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Old 09-03-2015, 10:41 AM #7 (permalink)
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Default Re: DPS Surgery Discontinued at Duke

Patrick you're right. But I think the missing piece in her is the role of the rib muscles, the intercostals, in exhaling. Diaphragm inhales and in less they parent with a vest to exhale I'm not sure how it will work. Dismaying and confusing for many I'm sure. I'm very lucky that seven years and I'm still breathing pretty well. Think about blinding the stem cells study when they were doing a major surgery to implant it in the lumbar region. But ALS patients aren't scaredy cats.
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Old 09-03-2015, 11:39 AM #8 (permalink)
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Default Re: DPS Surgery Discontinued at Duke

Patrick, I wondered the same thing, but one of my PALS's neurologists relayed the info.
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