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Twisted

I don't know what is going on with my DBS, my body is twisting in every direction and the pain is unbearable.  I trip several times a day because of the weird position my feet are in and my hips and knees are starting to ache because of the way I'm walking.  I have a twitch in my neck that makes it look like I am nodding my head or dancing to music and going out in public has become embarrassing and terrifying. 
I have seen my neurologist several times, who has done adjustments to my DBS and has taken x-rays and CT scans to make sure the leads have not moved.  Tomorrow they will have a meeting with the surgeon to discuss what is happening and what the next steps might be. 
I have watched Cody fight through obstacles every day, smile through all the pain he's suffered, and stand strong and brave through so many tests, operations, therapies etc.  I am trying so hard to be like him, to fight through these hard times with a positive attitude and really hope that things will get better. 
The thing is, I was so positive about my DBS and how it helped me.  My entire life changed after that surgery six years ago.  I opened my hand for the first time in 3 1/2 years!! It was simply amazing how much better I felt.  I believe that having DBS was the right thing to do, my symptoms nearly disappeared over the years but now I feel like I am back to square one and re-living the nightmare of full body spasms. 
I am confident that this will get figured out and I will be back to living pain free in a short amount of time.  I have a wonderful support system helping me fight these battles and pushing me to get some help.  I know things will get better if I keep my head up, keep praying for a miracle, and keep a smile on my face.

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