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Adhesive Arachnoiditis & the Effects on Walking. Anyone else?

Posted by louisagjafrwi923 @louisagjafrwi923, Oct 6, 2024

Has anyone have adhesive arachnoiditis. I've had it now for a number of years and it's starting to affect my walking

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carolynhughes75 | @carolynhughes75 | 1 day ago
In reply to @scouillard "I'm looking for a support group not on FB but on zoom or Skype any info?" + (show)
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I'm looking for a support group not on FB but on zoom or Skype any info?

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@scouillard
How do you join this arachnoiditis group ?

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scooter65 | @scouillard | 8 hours ago
In reply to @carolynhughes75 "@scouillard How do you join this arachnoiditis group ?" + (show)
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@scouillard
How do you join this arachnoiditis group ?

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@carolynhughes75
Try these two links: https://www.acmcrn.org/group/hack-your-brain-hack-your-pain/about
And: DokToks with Dr Tennant. I'm trying to put a group together up here in northern Minnesota. Hope this helps

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heisenberg34 | @heisenberg34 | 7 hours ago
In reply to @tintagel "From AI basically. Trial leads come in the cauda equina area at the base of the..." + (show)
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From AI basically. Trial leads come in the cauda equina area at the base of the spinal column. Permeant paddles are placed higher entering from the back at least in my case. Paddles cover more area and are place higher to utilize that ability. I am in process of a trial. I am getting a paddle not only for coverage but because the paddle is better for AA patients. Leads migrate. Paddles are put in by a neurosurgeon, and they take some bone out, place the paddle on the bone, and over six weeks the bone will adhere to the paddle. The paddle will then not migrate like a lead which is one of the most common complaints of all patients, including AA. One other thing, the paddle is better at keeping power (electricity?) from irritating nerves, at least the one I am using. This is off the top of my head from research done in the last couple of days, but I think it accurately tells what I learned from AI.

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@tintagel When I had my Medtronic SCS trial, the temporary leads were used because paddles get sutured in place, making them unsuitable for the trial. The paddle is great for the permanent implant because, as you noted, it will not migrate. My SCS died after just 2 1/2 years. They said several electrodes had burned out. I had the whole thing removed just over two years ago.

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