I have had a couple stellate blocks, which were good blocks (hand warmed etc) but no pain relief. No epidural or other infusions tried. I am not on "pain" meds per se... but do take topomax, baclofen, calcitonin, and clonadine. With all of those, my pain is mostly reduced to a feeling of very severely strained muscles. Although I am fairly misesrable, it is tolerable. I have not had at any time the burning or severe skin sensitivity. Just recently, I developed a small spot on my good foot, on a toe, that feels like someone holding a burnt out match to the skin, so that might be the start of burning.

I am able to do most things. I work at a computer sit down job, and can drive, although longer than half an hour gets to me. I don't have the strength I used to have, so can't open jars etc... but I have worked hard at therapy to be able to still putter in the flower garden, etc... even though it is a struggle, I fight to be able to keep doing these things and not stop.

So, for me, as I say, the main reason to do the SCS would be to stop spread, and in the back of my mind, it seems to me I have read about people having spread after the SCS. This doctor seemed to want to talk about nothing BUT the SCS. I am just not sure I am bad enough for that.

Say it does spread through out my body in the way it is right now - I could probably continue to live pretty much as I am now. At least I hope so.

jllenrad - your experience is just what type of thing that scares me about this. I am getting by "ok" as is. What if I went for this and things happened like it did for you? I would be much worse off. This guy said he has never had anyone get spread from having an SCS implanted - yet I know I have read it over and over.

However, RSD will soon cover my entire back.. so on the other hand, it won't make much difference, I suppose... but most of my other 3 limbs remain pain free - spots in them here and there are not, but most is ok ... for now.

It just feels like an SCS would be rocking the boat on a fairly calm sea for me. Sure, the idea of no meds and no pain is like dangling a carrot in front of a horse - but......????