Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-30-2007, 02:26 PM #12
bassman bassman is offline
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Join Date: Feb 2007
Location: Milwaukee Wis
Posts: 276
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bassman bassman is offline
Member
 
Join Date: Feb 2007
Location: Milwaukee Wis
Posts: 276
15 yr Member
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I have had mine for almost 4 years, now. A few thoughts from my experience.

1. Research you doctor's experience. Sometimes we hesitate to do that, since there seems are few doctors who even know anything about RSD. But, after I had mine for about 1-1/2 years, a different neurosurgeon said: "Who did this? I would have done it all differently." A different doc might have prevented some of my other problems.

2. The anchors for the lead are not deep enough, so they are constantly poking my skin from the inside. At times, I can't sit back without pillows propping that spot away from the chair back.

3. Question the location of the battery/generator. Mine was put in the hip-buttock area. I don't have as much "padding" there as some folk, and it feels like I am sitting on a fat wallet. (I should be so lucky! ha-ha) An alternate location is in the abdomen, but it is harder to run the wires and you need to avoid the belt area and the crease location when you sit down.

4. It will target a specific area. IF the RSD spreads, the SCS will do nothing for the new area. Unfortunately, that's what happened to me. The original spot is in partial remission, and another area is now going wild. So, the SCS is often turned off.

5. If you fly, you will need special screening from TSA security. Most of them have no idea what a SCS is. So, tell them "it is like a pacemaker, but for the central nervous system." They seem to get that.

Good Luck,

Mike
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