Hey there accox4, so sorry to hear what your daughter is having to go through and I know it has to be tough on you as well knowing there is nothing you can do to take her pain away.

I have had RSD/CRPS for almost 20 years. It began in the right side of my face and with a series of nerve blocks and medications, I was in remission for a long time. I hurt my right hand in 2009 and it came back with a vengeance. In addition to those two areas, I have it in my left hand and arm, left leg and something is going on with my right leg (hope it is not spreading there too). I cannot tolerate much medication wise, blocks did nothing for me this go around. So the last resort was getting the SCS implanted, I actually got two (cervical and thoracic).

I was losing the use of my hands and the SCS gave me use back. I am not pain-free, but I do get enough relief to work. It's a struggle, but I notice a tremendous difference when the SCS is turned off. The thoracic SCS hasn't been as successful, they had to go in a replace the leads and put paddle leads in because of movement of the first ones. The stimulation I do receive from it does provide relief just not quite enough, we are still working on it...

I do not regret my decision to get the SCS. It's a BIG decision and I know a very tough one for someone at such a young age. If I were you, I would do lots of research, ask lots of questions and check out the doctor thoroughly! Also ask questions of the company whose equipment will be used, St. Jude Medical (did mine), or Boston Sci, whatever...St Jude was so helpful to me.

Wishing you all the best,
Nanc