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Old 10-15-2009, 07:46 PM
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MelodyL MelodyL is offline
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Join Date: Aug 2006
Posts: 8,292
15 yr Member
MelodyL MelodyL is offline
Wise Elder
MelodyL's Avatar
 
Join Date: Aug 2006
Posts: 8,292
15 yr Member
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Quote:
Originally Posted by DanP View Post
I don't know Melody - that's been the problem from the beginning. We've used meds made for other purposes since PN came into being I guess. Seems like when I started 21 years ago that they really had nothing for us. I sure hope they find something really good soon. I still think our salvation lies with stem cell research and that will happen the day after I die. LoL
Well, Alan and I are still on a journey to find him some peace. He has an appointment in late October with a neurologist/muscle guy. I had spoken to his ortho guy (who did his operation on the muscle in his calf). It was supposed to ease the strain on his foot ulcer. The operation did not work. This had nothing to do with the PN by the way.

So I phoned his ortho and asked him questions about the Triple Nerve thing, and endoscopic decompression surgery (Alan and I watched this on the internet and said "WOW, IF THIS WORKS, THIS COULD ELIMINATE THE PAIN BETWEEN THE TOES".

See, Alan only has tingling (severe) between a pinky toe of one foot and the big toe on the other foot. So two toes on each feet are the only thing being affected. His feet are completely numb, but the tingling is only between certain toes on each foot.

So the Ortho guy had me send his very latest EMG studies and he called me back the other day. He referred us to this neurologist who will then take HIS OWN EMG test.

Then, if he thinks Alan can be helped, he'll send us to the next step on our journey.

What might this next step be? Well, in the surgery video, the doctor makes an incision between the toes (I believe the nerves in the foot were being strangled and compressed), and he inserted some kind of canula looking thing and he just spit it. I have no idea what he did but he UNCOMPRESSED THE NERVES.

So if Alan does indeed have something being compressed, AND THEY SAY EMG RESULTS ARE VERY KEY HERE, well, we shall see.

It's a journey, 18 years, and still going strong.

Take care,

Will update.

Melody
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