I just wanted to update everyone on what’s been going on with my pain. The doc’s determined that the occipital stim they repositioned October 2010 was working but they could not determine why the stim was sending signals laterally from the base of my skull on the right side to the left side of my skull. Since the vast majority of my pain now is focused around my right eye, the best – educated guess is “Supraorbital Neuralgia”, so we decided to try another procedure.
Friday 2/24/2012 after a successful trial with supraorbital and infratentorial nerve stimulators, they removed the existing occipital nerve stimulator and placed a supraorbital nerve electrode and infraorbital nerve electrode above and below my right eye.
They were able to use the existing generator; they did however have to tunnel down with the placement of the leads. My pain level related to the neuralgia is 0 however I do have surgical pain behind my right ear, down my neck and into the generator. I have a lovely black eye, not sure how that happed but it’s something to talk about. :-) Fingers crossed on this procedure.
I am blessed to live in Oregon and have access to Dr. Kim Burchiel and his team at OHSU.