[Leggiesmcb]

Hello all!
About 1 month ago I had my 2nd nerve stimulator trial. The first was unsuccessful as I received sensation in my all my limbs (my RSD is located only in my left arm). They presumed the lead may have moved… but after checking all was where it should have been. Anyways, my second trial produced the exact same results but gave stimulation all the way up through shoulders and ears. And I was not getting it in the right points in my arm. It was like the stimulation skipped the areas containing the RSD. After hours of tuning 2 days after putting it in, my pm Dr. took it out (they used an anchor this go round to ensure no lead movement. He told me he was going to use 2 leads then waking up afterwards the St. Jude rep. said he just used one because he thought he had covered the area. That was frustrating to me in the sense that he sent me to a surgeon to see if I should get a 2nd trial with two leads… so I thought that was the entire point of a second trial.) concluding that stimulators are not for me. No the rep said in her 28 years she has never seen something like this. Only sensation into the entire body if that was what was intended. Has anyone had any experience like I did??
My pm Dr. said has nothing left that he can perform so he is sending my for a nerve scramble. He did bump my gabapentin from 3200mg to the max 3600mg. My pain meds keep going up as my RSD gets continually worse. I am wondering has anyone had a nerve scramble and how does it work? Have you had good responses to it? Any information or experiences about the scramble or if anyone has had the nerve stimulator work like mine did I really would appreciate hearing about them. I have many other “unusual” health issues and being 21 its frustrating to keep hearing that doctors don’t know what to do with me and I am such a mystery because I feel so alone. People who don’t have RSD really just don’t get it. My mom and I wish to go into my drs like the endocrinologist to get a diagnoses to know hear we are dealing with and how to combat it but I somehow have continually been landing in categories all by myself.