I have had my Neurostimulator(NS) since August 2009, In October 2010 , the leadwire was replaced and relocated as it had come lose and had curled I believe besides my neck.
I still experience pain on a daily level, sometimes the back of my ear feels swollen, my eye and eyebrow ache, in front of my ear hurts kinda like an ear ache. I have numbness in parts of mmy lower cheek and one side of my tongue is numb and bothers me. The numbness I was told was becuase of the surgery, which I can accept. I had hoped that the NS would relieve 100% of the pain, I have changed programs on my stim, I can feel it vibrating and it does offer relief but the pain listed above is still there. Is this normal?
Should I go back to the doctor and tell him, options?
It’s just something that I have learned to live with. I am tired of having the constant pain. It’s better with the MVD and NS but it’s the headache, (right side only), its the pain
It's just something that I have learned to live with. I am tired of having the constant pain. It's better with the MVD and NS but it's the headache, (right side only), its the pain
I am still having pain; the stimulator is pulsing laterally at the back of my head instead of vertical up along the right side of my head. I ended up shutting off the stimulator, and am in constant pain. Went to see the neurosurgeon’s team and they determined that the lead is placed correct but can’t explain why it’s not working correctly.
The team feels that their best educated guess is to put in occipital stimulator leads above and below my right eye. They also hope that that it will stop the pain and they may readjust the neuro stimulator.
Anyone else have any experience with an occipital and neuro stim? I trust my team. I am using Dr. Kim Burchiel from Oregon Health Sciences University.
I had an occipital lead above my eye that worked quite well - it felt nice, although it did not address the pain that traveled farther up my scalp, but I knew that that was not going to be possible from conversations with my NS. I had trouble with the lower lead, it migrated, we placed it two different times, 1st due to lack of adequate coverage, second due to the migration. The system was ultimately removed in it's entirety because my tissue scarred around the wire in my neck and chest to such an extent that it stopped free movement of my head.
So, Yes, the upper felt pretty good, the lower felt good when it was in the right place, but then it migrated, so they need to get it tacked down well. And I would suggest that you adjust your expectations - hoping for 100% relief is more than a bit of a stretch. The best that you should hope for is some mitigation of pain, to bring it to a hopefully more tolerable and liveable level.
I have hear great things about Dr Burchiel. Good luck with it all, I am envious, I wish that I could have my stim back, and would have loved him to have been my NS.