Swimming Against The Current

On Wednesday I spent six hours driving in the rain. I spent one hour sitting in a waiting room and I spent 20 minutes with my doctor. In that twenty minutes I went through a roller coaster of emotions as I was told this might not work again. The impedance numbers on my DBS are off, once again, indicating a possible break in the wire. This is exactly what I just had fixed. I don’t know what’s going on or what to do. The pain in my back is so intense I can’t sleep. I wake up a million times a night then I’m so exhausted during the day I can barely keep my eyes open. My hands are closed so tight they throb and swell and doing simple every day tasks are nearly impossible.  When I had my dbs, seven years ago, I had high hopes it would change my life. Shortly after that surgery, it did. My symptoms were under control for seven whole years. I don’t know what changed but recently it’s not working and it’s beyond frustrating. I’ve had the settings changed more times than I can count, som...

About 5 months ago, my life began to change again.  My dystonia symptoms came back strong and started to attack my body. It started with my left hand and slowly moved to my left foot, my right hand, right foot, back and neck.  The pain was unbearable and I knew something about my DBS wasn't working. I started out by going to Boston to see my neurologist.  He did a CT scan to make sure the leads didn't move, and tried changing my settings several times.  My symptoms didn't improve, and in fact started to get worse.  I started to get a shocking feeling in my head.  Every time my left DBS was on I had this feeling on the left side of my head.  I had severe headaches and over the last year had been experiencing eye pain and dizziness. My neurologist didn't know what else to do, so he sent me to the director of the movement clinic at Brigham and Women's hospital.  He tried changing my settings as well and decided I should have an MRI of my head....