Amy,

Sorry to hear that the RSD is becoming a controlling painful monster. My RSD started in my right leg (knee down to toes) due to an auto accident and possibly from the surgeries to fix my dislocated knee cap, torn meniscus, bone chip in ankle and Lis Franc Fracture in my foot (had toes fused to "help" - yeah, right.).

The pain was unbearable, the tingling, the coldness, the achy unstable lump that was once my leg. I was stupid though. I didn't research RSD completely. I went through all the fun injections (hurt like hell) to the point where I did the spinal cord stimulator trial. Out of a week, I had one good day (the last day). The relief it provided was amazing, or so I thought. I think I was just happy to be "pain free", and the "promise" of once the permanent is implanted, it would work amazing.

Well, the first attempt at the stim had to be redone. Even though in the trial, my doctor knew the leads migrated, he didn't "permanently" place the leads. He also placed my battery under a stretch mark, and this caused the battery to move into a position where no one could "safely and quickly" communicate with it. Two months later, an orthopedic surgeon performed a laminectomy and placed a paddle instead of just lead wires. He also moved my battery to another location.

Since the laminectomy implant, my RSD has gone from just my right leg to what I fear might be a full body. It is affecting my arms, hands, fingers, back and neck. I can't use my stim because it affects my heart/chest. Even with the stim off, I am feeling sensations in my chest that feel like my limbs feel. This makes me think that is "all over".

I am seeing a doctor/specialist on the 29th of March in Cleveland. People say that the Cleveland Clinic is great for RSD treatment. Treatment of RSD responds better when caught quickly. Avoid surgeries if at all possible. Consult with a neurologist if you can. Research and read! Ask questions! If the first two blocks don't help, look into something else and look quickly and aggressively.

RSD is a crappy thing. Not too much information out there and the pain management doctors all seem to want to do the same thing - blocks and then the spinal cord stimulator implant. Ask yourself if the risk of it taking over everything is worth the relief for just one part of your body right now. If I could go back with the knowledge I have now, I never would have consented to the 2nd implant. I would have forced my orthopedic surgeons who told me that the icy cold water dripping, tingling, swelling, mottled coloring and bruises that seemed permanent was nothing and would go away to send me elsewhere. To send me to a neurologist at that time. Surgeons always do their "jobs right". It's always the patients fault or it's in their head.

Please research and read. Ask questions. I cannot stress this enough. Hugs to you and best of luck on your "journey" through what I call hell.