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Scared

When I had my DBS put in last year, for the third time, I had a positive attitude that it would help me but I also was having bad dreams that something bad was going to happen.  I was anxious and scared the morning of my surgery but I went into the OR feeling pretty hopeful.  When I woke up in the recovery room, I was so thankful that I was alive.  I didn't know if my DBS was going to work, but I knew I made it through the surgery. 
Shortly after having my DBS turned on, my dystonia symptoms seemed to be improving.  I was so excited to finally get some movement back and feel less pain.  A few months after seeing my symptoms improve, I was told what my surgeon really thought.  She told my mom and Jim after the surgery that there was a lot of scar tissue and she wasn't sure if it would work.  It didn't seem to help in the OR when she turned it on like it did the first time I had it done.  She did not think it would work this time.  I was so ready to prove everyone wrong with the amount of progress I was seeing as time went on.  I was feeling less pain and my hand was somewhat working again.  I had to have three surgeries on my hand, mostly for the damage done over the years but at least it was open.  Now I'm having other problems with it.
Recently, I have been experiencing symptoms again.  It brings me back to hearing those words that my DBS might not be working.  It really scares me because if it fails this time, I am done. I checked my handheld device the other day and for some reason my DBS was turned off, I have no idea why it was off but I turned it back on and I haven't seen a lot of improvement.  The left side of my back, down my left leg and my left foot are a complete mess and walking just to the kitchen makes me cringe. I honestly don't know whats going on and don't know if its dystonia related or not.
A couple weeks ago, I started working out more and was so motivated to get into shape and its getting more and more difficult. I'm so tired of being in pain and not being able to ever do anything.  Deep down, I want to fight through the pain, suck it up and prove to everyone that dystonia is not going to get in the way of the many dreams I have but here I am, once again letting it stop me.  I'm feeling so discouraged lately but hopefully soon I see some more improvements and my DBS starts helping me more.

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