I'm sorry to all of you who think I am complaining. I am not doing this to complain, I am doing this simply to help others. I feel that if people read my story, they will know what dystonia is like and people with dystonia who are thinking about DBS will know more about it. As bad as it was to get the infection and have the DBS taken out, it was a great experience because it worked and now I can have it done again but this time know what to expect. As far as my shoulder goes... I am desperately seeking some help. I would love it if I knew how to pop my shoulder back into place. Even when I have a shoulder subluxation not a dislocation it is very painful and wish I could just get some relief. So if anyone has any suggestions let me know!! :)
I have been doing as well as could be expected. I am back in Florida so it's nice to be with Ryan. Although I am still upset about the whole thing, I am trying hard to smile and not let it show. The spasms have returned and have gotten worse since the DBS was removed. When I suck on a piece of candy or ice, my throat tightens up. It's very scary but Im hoping it won't get any worse. My neck also twitches sometimes and my foot spasms have come back. My hand is curled in but if I think about it, I can straighten my wrist (not my fingers). The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open. I had never been so excited as I was that day. I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey. Hailey helped me ...
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