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Old 06-15-2011, 06:25 PM
nothing_clever nothing_clever is offline
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Join Date: Jun 2011
Location: Albuquerque
Posts: 8
10 yr Member
nothing_clever nothing_clever is offline
Junior Member
 
Join Date: Jun 2011
Location: Albuquerque
Posts: 8
10 yr Member
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At this point I'm extremely ambivalent about my SCS. It (or rather, they -- I've been through a few) definitely made a huge difference for me when I needed it, but not without regrets.

On the one hand, I probably never would have managed the pain well enough to get my RSD into remission (over 5 years now!) without SCS assistance. (This counts for like 3 or 4 plusses in favor.) On the other hand, this assistance involved 3 SCS's and 8 (IIRC) surgeries, because the damn things kept breaking.

On the one hand, the sensation of using it was downright pleasant (I like to describe it as my legs feeling like they're purring like a cat). On the other hand, the 6-8 week don't-you-dare-move-your-back recovery for each surgery sucked.

On the one hand, being able to adjust the stimulation (i.e., pain relief) as needed was great, since my doctors refused to prescribe anything taken as needed for pain. On the other hand, when the leads slipped out of place, the stimulation would change location and sensation, and could actually be painful enough to make the remaining relief worth it.

On the one hand, I haven't used my most recent SCS in half a decade and it doesn't interfere with daily life. On the other hand, the scarring on my back and butt, and the big chunk of metal in my buttcheek, are downright grotesque.

I guess I would recommend it if you've exhausted other options, with a few caveats.

1. Don't go with an internally-powered SCS unless it can be charged transdermally. My docs claimed the battery in the first one would last 3 years. Of course, they're never wrong, so they made sure I knew it was my fault for burning out the battery in under 6 months. Don't let this happen to you.

2. Be aware that having an SCS implanted will place permanent constraints on your life, even if you make a full recovery. While suffering excruciating pain this won't be a concern, but if it helps a lot and/or the pain subsides, you might want to do something fun, only to discover that it is absolutely contraindicated if you've had an SCS implanted (e.g., no SCUBA). It's a really rude surprise to first discover this just as fun is starting to become relevant again. Inform yourself first, save yourself the stress of shattered false hopes later.

3. Consult all your options first in regard to what model of SCS. If it's a take it or leave it on one model or manufacturer, run.

4. Try to think of any questions or concerns you might possibly maybe have about it (now or in the future), no matter how silly, and find out the answers before you make the leap. You're seem to be off to a good start on this.

Good luck, whatever your decision!
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