SCS side effect question
 

This post may belong in the sub forum, but I wasn't sure . . .

I had my implant about 3 1/2 weeks ago, and every time I turn the stimulator on, my foot swells up with pitting edema and I get immediate color changes to a dark purple. I'm super sensitive to vibrations, and this is the same thing that happens when my foot flares up when I'm around a lot of vibrations (a lot of clapping, loud bass, etc).

But my doctor keeps telling me that this is a GREAT sign, and that it means that the scs is working really well, that it's increasing my circulation. I don't think pitting edema has anything to do with circulation, but I'm not a dr . . . The reps tell me they've never seen this before, and that I must have the most severe case of rsd they've ever seen (I still work full time, and handle a modified family life, there's much I can't do but still much I can). I have 70% rom in my leg, and up to the stim implant only had the pitting edema and color changes when I flared up. I feel like my reality does not correlate with me being the worst case of rsd an experienced Boston Scientific rep has ever seen.

So my question is - has anyone heard of this before? I feel like the scs is causing me to flare because of the internal vibrations. My dr thinks that the scs is helping immensly and the pitting edema is a good sign. Has anyone ever run into something like this before? I've stopped running it and after a week the edema and color is finally down. It just doesn't seem right to me . . .

Hi Hollyk24
 

I'm sorry you are going through this! This indeed sounds very strange!
Did you do a trial run with the SCS and if so, did you notice any signs of this reaction at that time?

Caring,
Rae
:grouphug:

Yes, during the trial I had the same reaction, but my dr convinced me it was due to the fact that my back hurt soooo much that I was standing much more then usual and had put my foot into a flare . . . But with the perm I have not been standing anymore then usual, so that's not the case.

It's strange too that this happened during the trial and my dr says one thing, and now that the perm is in, says another . . .

I don't see how a doctor can equate pitting edema with being a good sign of improved circulation.

Me neither - it makes no sense to me. Plus to have the reps say they've never seen a reaction like that too . . . I know my body, and my foot is flaring up when I turn it on, it's not "amazingly helping".

I just wanted to make sure I wasn't totally out in left field with this and that it wasn't a common experience with the scs and rsd . . . I looked all over the Internet and couldn't find anything about the scs and swelling of any kind, except for people saying it had reduced normal swelling. I want it out, because at this point I'm not using it and my foot/ankle are back to their 'normal' post rsd size. I've tried turning it on for a day again and again, pitting edema and color changes with increased pain. So I don't think it's a coincidence.