Had my appt. at pain dr. yesterday and worked with rep. on some reprogramming. What I'm finding is that if he adjusts things in a certain way, I feel the stimulation not only covering my lower back but also up into my middle/upper back, which I do NOT like. So we're having to settle on my feeling it more in my upper legs in order to get the coverage on the lower back that I need. He said that with the nerves the way they are in our bodies, it's either I feel it more in my middle/upper back or more in my legs...I opted for my legs.

Jackie, maybe your stimulation needs to be redirected and it's going up into your middle/upper back?

Something interesting he said. I asked him to keep both the programs that have been best for me so far in both my lumbar and cervical areas....while they're not perfect, they've been the best. I asked him if we could do an experiment with an extra program in both lumbar and cervical. He said "yes, what do you have in mind?" I told him I'd like a program where the only coverage I get in my lumbar area is my lower back/hips and a program where the only coverage I get in my cervical area is my low neck/across my shoulders. He said that he could not do that. He explained that the way nerves are, the stimulation comes from the feet on up to the back, and from the hands on up to the neck, quite the reverse of what I was asking for. So we settled on a midway point and I have two additional programs to try now.

So, I'm having to accept that I may not get as much pain relief as I'd hoped (unrealistic expectations again ) but if this turns out to be as good as it gets then it's definitely better than I was and I'll live with it. He feels that some of the other problems I'm hoping the SCS will resolve are unrelated and due to my other health problems. He said that SCS units are to relieve burning, stabbing, throbbing, aching NERVE pain, not muscle pain. However, once nerve pain has been dealt with then MAYBE some muscle pain that was aggravated by the nerve pain will calm down and MAY go away. So I'll have to wait and see how things shake out.

He did say there's a fine line with these SCS units in that if we turn them up too far they cause more pain and that we have to find our own level where we get the most pain relief without going beyond that and actually causing pain. He reminded me that as I'm still scarring in, things could change but maybe not as much as I'm expecting/hoping for.

They did tell me that now I'm 6 weeks post-surgery I can do some easy stretching and can ride my bicycle for short periods. I go back in two months and at that point will discuss starting physical therapy.

So, Jackie, maybe your stimulation needs to be changed. Maybe it's affecting your upper/middle back and is causing these pains you're having. Just a thought.