I'll do this as a Q and A. I was 16 when I had my SCS implanted, 17 when it was removed, and I'm 24 now.

Did you have a SCS put in? Yes, many years ago. It was only in for about a year.

If you were given relief from the SCS how long? It was a kind of off-and-on thing, as I remember. It was great for a while, the leads would move slightly, and I'd need it reprogrammed. Eventually, the doctor I was going to gave up on me (not sure why, I responded really well to some treatment). The new doctor I saw didn't use SCS, didn't have the equipment to reprogram, and essentially wanted it removed. The deal was that if I agreed to have the SCS removed, he would let me have a TEC (which he normally wouldn't do). It was the best I could hope for, so I made the deal. It turned out fairly well for me in the end.

Did you still have to take pain meds? I suppose I never really took pain meds. My doctors were always...unhappy with giving me anything stronger than tramadol, which sounds kind of ridiculous. But when I did get stronger pain meds once in a while, I found that they didn't work all that well anyway. With the SCS, I did continue to take the same medications.

Any complications after having one put in? Nope, I was lucky!

Did the trial work better after the implant? I suppose this means THAN the implant. And in my experience, they both worked the same.

Has it affected your mobility in anyway? For the first month or two, I had to be very careful not to bend and twist or anything. It kind of sucked. I wasn't even supposed to lift my arms over my head, like others have said. After that, I guess I just did what I would normally do. My mobility was already very badly effected by the RSD (severe dystonia in my RSD leg), and the SCS didn't help that very much.

Sometimes now, I kind of wish that I hadn't had to make that deal. It would have been easier to leave the SCS alone and do a TEC on top of it. But it didn't work out that way, and there's nothing to be done. It makes getting on planes easier without the SCS, I guess!

-Betsy