Removal of neurostimulator causing tremors and pain.....HELP!!!!!!!

Hi my name is Rachel and I desperately need help!!!!!!!!!!! This story revolves around the removal of my neurostimulator but here is some quick background first. I have had RSD aka CRPS since 1996. In 1999 I had my first neurostimulator implanted. The problem is after five months or so the battery part would begin to migrate out of its "pocket" towards the surface of my skin slicing through muscle as it would go until it would almost break through my skin. As you can imagine this was very painful and caused me to have a revision surgery to put it back in its place every 10 months or so. Anyway, after enduring more than a dozen of these surgeries and the pain of the battery constantly coming out of place, I finally decided to have it removed 01/07/13. It was an exceptionally difficult surgery as the lead was really tacked down by scar tissue. The surgeon had to split part of my back in half and remove some pieces of vertebrae to get it out. Anyway, ever since that surgery that took place in January 2013, I've been experiencing tremors in my legs that sometimes lead to full body convulsions. These can last anywhere from 20 minutes to 10 hours. I feel an incredible amount of pressure in my back around/under my shoulder blades and under the incision that is between them. I also get a feeling of being pricked or stung right over my spine from time to time followed by swelling, incredible pain and the shaking. Nothing is showing up on the MRIs I have had and I am desperate to find the cause. My neurologist is now advising me to see a shrink and telling me I am having sudo seizures that are being caused by my subconscious. I feel so defeated because I can feel something in there that did not show up on those darn MRIs. I woke up from that surgery shaking for 12 hours in the recovery room for heaven's sake. I am totally couch and bed ridden now and just want answers. I know that we who suffer from RSD/CRPS are hyper-sensitive to any physical disturbance and believe even bone dust from the drilling could be enough to really mess me up. Anyway, I am wondering if anyone else has experienced anything remotely similar to this following the removal of a stimulator lead? I am grasping at straws here and know this is not caused by some subconscious defect in my brain. It can't be a coincedence that I was shaking and having tremors the moment I woke up in the recovery room. I'm so grateful for anyone's advise or to hear of a similar story. Thanks soooooooo much! Rachel

Hello Rachel,

I am hoping for some relief for you <3<3

I have a stem and when it is not working properly i am shaky, i hope you find something soon that will help your quality of life.

<3<3 BunnyGirl

I was being treated by a PM he first was treating me for a ruptured disk. He gave me two nerve blocks that did not work. So then he come to me and basically tells me it is all n my head and I have to either learn to live with it or become a drug addict. I started crying and he went to consult the doctor who sent me to him which wasa neurosurgeon. This neurosurgeon took the MRI showed him the rupture and set him straight. What I didn't get was why would he do two nerve blocks if he did not think it was a rupture disk. Also his nurse would tell me I could not get more pain meds without asking him if he would give me more. She would say it was a 30 day dose and when I saw him he said no it was a two week dose. So my long winded point is do not take that it is all in your head BS. That is what doctors say when they can't figure it out. Get a second opinion. Get a third if you have to. Someone somewhere will be able to help you. Good luck