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Dystonia awareness month

 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 the surgery my head got infected. After 6 weeks of antibiotics I had to have it removed. In December that same year, I had a new one put in and it was successful for 7 years. 

After 7 years my symptoms returned pretty badly and we went through the same thing I did in 2009. Trying to find a doctor to help me was very stressful since mine stopped communicating with me and my surgeon moved to New York. Every doctor told me something different but it wasn’t until I went to my original surgeon that we figured out my DBS was broken. Because it took so long to figure this out, I had permanent damage to my hand. I ended up needing my DBS replaced that year then 5 hand surgeries to try to fix my damaged fingers. 

At the moment,  my DBS isn’t working 100% and I travel to Albany to get Botox in my hand and foot every 2-3 months. Stress makes it a lot worse so when I’m feeling down or worried I just grab my hand  brace and get ready to fight the muscle spasms.

I know most of you know my story so I’m sorry about the repetition but my goal here is to spread awareness to at least one person who doesn’t know what dystonia is. My hope is that if someone is experiencing the same symptoms as me they can reach out to me and I can help them. My wish is that if you have a similar story as mine and you run into doctors that treat you like you’re stupid and have too big of an ego to help you, you can stand up to them and tell them to screw off. I have been chasing doctors my whole life, doing my own research and searching for relief. People who don’t have dystonia don’t know the amount of pain it causes and I don’t try to explain it but all I want you to know is that there is help and there are doctors out there that know what they’re doing. And if all you need is someone to vent to about your pain and frustration… please reach out to me because I do know what it’s like. 

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