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Experimental treatments targeting leg weakness due to nerve damage?
Damaged my spinal cord and exiting nerves twice now. Once due to a large hematoma that wasn't drained and the next time was a 4-wheeler accident that hit so hard I had L4 compression fracture, fractures, broke loose both si joints, damaged both sciatic nerves and others, etc. Needless to say I suffer from incomplete paraplegia, left greater than right. My left leg is basically useless (but maybe not), but my right leg has some life left in it. It buckles under full weight a lot, and I wear full kafo's bilaterally, but my goal is to at least get out of the right kafo eventually. The muscles work, just really weakly. The nerves are damaged, yes, but I can still control the leg for the most part. If there were something that could help target the leg muscles and make them stronger, I do believe I could use that leg without braces. That's my goal. I've had a LOT of surgeries, fusions, etc so I'm up for anything, even experimental. This is now one of my main goals in life, so I'll do whatever it takes to reach it. Any help, direction, advice, or leads would be greatly appreciated.
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Hi,
So sorry to hear about your experience. It must be very traumatic and now frustrating. It seemed this incident would have put you on a bed for sometime and weaken your muscles a lot . You did mention there’s a possibility your left leg may not be useless and you can currently still feel your right leg. Did the doctor who treated you mention physiotherapy? Or was everything ruled out?
Cheers,
Louis
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1 Reaction@louissc
If the left leg has any hope, it's minimal. And no, most every doctor I've seen has basically just said that this is me now. On Tuesday they're removing the failed left side si joint fusion rods and bolting both si joints, so there will be even worse muscle damage/weakness added to it all. I'm open to anything, though. I have a tattoo that says "fight until the end" and although I gave up for a little while because of everything that keeps happening, I'm now getting back on track and I want to improve as much as physically possible. I may be deluding myself, but I'm still going to try.
@gunner1911
Hi,
Your determination to get out of at least 1 kafo and living life as normal as possible despite limited sensation of the bottom half of body is great! Just wondering, they do not intend to replace those damaged fusion rods?
I’m afraid I cannot contribute much here. All I can say is in many ways a new normal of yourself will emerge. You can physically improve, but not recover to the same level, Instead of fighting against this, why not find and think how are you going to live life from now? Don’t constantly compare how things used to be and think they were definitely so much better. You will definitely be depressed. Imagine going to the mall. Previously you drove your own car, but now you’re gonna wait for the slower Uber. But in the end? You’ll still reach that mall, just in a different manner. Reaching the mall is the more important goal but so often we are too obsessed with how we get there.
I’m a left handed guy. This world is built for right handed people. I just do things differently in order to survive in a world not built for me. You have no idea how difficult things can be sometimes. I don’t fight it but work around it. If not? I’ll be constantly frustrated.
I wish you the best.
Cheers,
Louis
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1 ReactionHave you looked into robotic assistance?
See: https://biologyinsights.com/what-is-a-robotic-walking-assist-device/
@georgescraftjr
I had not. I thought that was still just the stuff of movies. Now I'm intrigued, especially for my left leg. Down the rabbit hole I go tonight. Thank you!
@gunner1911
See:
https://src.stanford.edu/
https://www.amazon.com/exoskeleton-walking/s