Dystonia awareness month My journey likely started long before 1998 but that year was when I dislocated my shoulder for the first time. After many doctors, misdiagnoses and people telling me I was making it up I was sent to Children’s hospital in Boston and in 2000 had my first shoulder surgery for “instability”. By 2008 I had had 6 shoulder surgeries. That year, after the last surgery I lost use of my left hand. Many more doctors and tests later I was finally diagnosed with dystonia in 2009. After many trials of Botox, medications, hand splints and therapy we started to discuss the possibility of deep brain stimulation. By this point it had traveled to my feet and my neck and I would sometimes need my mom to massage a cramp out of my neck in a parking lot so that I could drive home. In 2011, I had my first DBS placed. My hand opened for the first time in 3.5 years in the OR and we all had hope that it was successful. It worked great at first but 2 months after...
My life-long battle with Dystonia