Wednesday, March 2, 2016

My Story, Continued......

After calling off of work for 3 days I had to take a medical leave of absence. I went back to my primary care doctor and they referred me to a neurosurgeon who saw me the next day (usually it takes 4 months to see this particular doctor). I could tell by the way he and his intern walked me out the door holding my hand that I was not in for good news. He then referred me to a neurologist who specializes in movement disorders who saw me the next day.

The movement disorder specialist told me that I have a rare brain disorder called Cervical Dystonia. He told me that my treatment options involved a series of Botox injections into my neck that would paralyze the muscles causing the pain and pulling that I could not control . He also prescribed a muscle relaxant called baclofen and an anti anxiety medication called klonopin. I was also given a prescription for vicodin for pain but that made me very sick and I am NOT able to take any opiates or pain medication. They all make me so sick it just adds to the pain. He also told me that there is no cure for this disease and that as a last resort they do a procedure called Deep Brain Stimulation which involves a surgically implanted, battery-operated medical device called a neurostimulator—similar to a heart pacemaker and approximately the size of a stopwatch—to deliver electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor and dystonia symptoms. Fun.

Let me describe how dystonia feels. You feel like you may have been poisoned and then you feel nauseous and sometimes dizzy. Your muscles are so tense and sore and they will not relax. Then you start to feel panicky because you do not know why this is happening. Your mind is sharp yet you try to control your body movements and it does not work. The pain is excruciating. It feels like someone is pulling the back of your head by the hair and your muscles have turned into coiling serpents under your skin. You feel possessed. You cry A LOT. The part of the brain that is damaged when you have Meige/Dystonia is the Basal Ganglia and it controls muscle movement and emotions. It sucks. Dystonia just plain sucks.