November 30, 2005, exactly a year ago today, was the same story then as now.
After traveling from Denver to Sacramento for Deep Brain Stimulation (DBS) surgery for Parkinson’s Disease (PD) in May 2005, I returned to Sacramento on November 30, 2005 for another DBS-related surgery. I experienced pain and discomfort in the right side of my head, neck, and around the collarbone where the battery was implanted. The wires from DBS were protruding, and I had a pulling sensation. I was afraid that the wires might snap. It felt like the DBS Cowboy had lassoed my neck and was pulling me to the right.
I wondered if the extension wire was too short. I hadn’t even known about another possible complication until the neurosurgeon suggested that the wires might be caught up in the scar tissue inside my body. He said that a few of his patients recently reported this same problem. The kind doctor even met with the Medtronic’s folks, the manufacturer of the DBS system, and tried to persuade them to change the material that coated the wires.
The neurosurgeon performed a procedure that untangled the wires with no promises or no guarantees of relief. To the layperson, it seemed like he said that instead of going through the brain, he went through the incision above the battery around my collarbone, pulled the battery out, and untwisted the battery until the wires became untangled from the scar tissue, similar to when your telephone wire is tangled and you untangle it. I’m sure the procedure must have been more complicated than that, but in comparison to brain surgery, it was relatively minor.
I was delighted to experience relief for nine or ten months. I could move my head and neck with relative ease.
The DBS cowboy has revisited, trying to lasso my neck. I have the same “tangling of the wires in the scar tissue problem” as last year. I want to do whatever I can to get this problem resolved, and move on with my new life.
I yelled at the DBS cowboy, “We’ve got to stop meeting like this.”