The last few days have been the worst days I've had in a long time. I was very hopeful and positive that I was getting better until this whole infection. I had an MRI on Monday and they couldn't finish it because my head felt weird when they turned in on so I ended up having another CT scan. The CT scan showed that the infection had spread and the whole device had to come out. Tuesday morning, they took it out. I am devastated. My hand is already curled in and my feet have already been acting up on me. I just don't know what to do, I am back at square one and just want to go back to FL with Ryan. I was so looking forward to going back there and being better. When the infection is gone I am going back there and when we move back I will have the DBS put back in. There is only one problem. My surgeon is moving and will be working in NY so I will have to go there to have it put back in and I'm not sure if my insurance will work there. I am so upset but hopefully in the near future things will get better.
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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