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Grand Magnate
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Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
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Grand Magnate
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
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Hello Yellow!
WELCOME to this fantastic forum!!
Y'know I had to read your post twice because I thought you had copied MY original post!  I got my SCS for the very same reason you came here! At that time I looked high and low to find other people with my very same pain condition. Mine started in the knees and radiated outward to include both legs. I too worked with young children (in Sunday school and a youth Christian band....we were called "The Trust JC Band"
Also, I had the injections (sympathetic nerve block) with temporary relief.
I try not to give people this much hope before their trials, but everything about you says to me that you'll be pretty happy. The soothing relief the SCS offers has been a Godsend. You'll just have to adjust yourself accordingly. (charging your unit, etc) Like you said, your quality of life has taken a dive. I'm so sorry someone as young as you has to deal with this.
Some things I wish I would have known beforehand are:
-- Don't wear elastic knee-wraps or anything tight around the knee area (if you have a neurologist, he will tell you that)
-- Be careful wearing the lumbar belt, as anything tight will cause additional burning pain....I thought my RSD was spreading to the back until I was told this.
-- BE SURE to mind all the BLT's. Take it from me who had to have a revision (actually I had the one lead removed, but that's another story)
-- during the trial, I think Mark hit on this, regarding the tape on the back. The hospital will put plenty, but what I did when i got home was i taped the lead wire in another spot just below the rest of the tape, that way, when you get it hooked on something (and you will), you've got double the protection and it won't pull directly on the lead implant site.
-- CRITICAL to a successful outcome is good communication with the surgeon and the rep as they are placing the electrode. You need the stim to be exactly where u need it and you don't want any 'pulling/grabbing' sensations -- that means it's too strong
And yes, Mark joined us in April and we're forever grateful.
It's great to have you here! I hope you'll stick around!
Caring
 Rae
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