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Hands

A few days ago I went in for my 16th surgery. It was my third surgery on my hand. My hand is so screwed up and will never be normal again. The reason it got this bad was because it took a year and a half for someone to realize my DBS was broken. It makes me sick to think about it and to know that if it was fixed right away I wouldn’t be having these problems with my hand.

I had a nerve block and at the end of the surgery it wore off, even though the nurses are telling me it worked great. I was screaming in pain because I could feel everything that was happening. I could feel someone grabbing my fingers that they just cut up. It was horrible. They ended up giving me pain medicine and sending me home. Last night I realized I have no feeling in my thumb. I’m hoping this is just part of the healing and I’ll eventually get it back.  The pain is getting a little better each day and I know I’ll be fine but I don’t know if I’ll ever really be able to use my hand normally again. I’m trying my best to stay positive though. 

Tuesday I’m going for a follow up with my neurologist to adjust my settings on my DBS. I’m hoping this will help with some of the neck pain I’ve been having. 

I’m waiting to hear back about a date for the dystonia walk this year but it will most likely be in May, so be ready to hear about all the details very soon. 

Thank you for following my story, I will write again when my hand is back! 

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