Diann Shaddox Foundation for Essential Tremor
Updated A short story of my life with Dystonia
By Elaine Gross Dixon on Sunday, June 29, 2014 at 3:10pm
Dystonia is genetic on my mom's side of the family. My mom, grandmother, two uncles, and one cousin, then myself. All have had Dystonia. I believe as a child I was probably showing Dystonia sysmtoms. At the age of 3 to 4 years old I remember laying on the floor and crying because my neck, back, and legs hurt so much. But, my parents said it was growing pains.
It wasn't until the age of 22, in 1977. That I realized there was something terribly wrong with me. I was working sitting at a desk. I couldn't look at anything straight on. My head would always lilt to the right side. I would look at things out the side of my right eye. People at work made fun of me. I had just severe pain in my neck and shoulders also. I also had severe leg and feet cramps. I went to doctor after doctor. Was told it was nerves, was all in my head, nothing was wrong with me. I also went through 3 neck surgeries. My neck is fused from C2 to C7. Therefore, I can't turn my head to the right. But, with Dystonia my head still wants to turn and lean to the right.
It wasn't until 1995, that I saw a show on TV with a man that had Dystonia. He looked exactly like me. I said to myself, "That's what I have." I made an appt. with a Neuro. immediately. I told the neuro about the program I had watched. And, told him I had Dystonia. He agreed! Finally, I had a diagnosis. I started receiving Botox injections immediately, ended up receiving Dysport, Myobloc. Until I developed immunities to all of them. I was on the injections for 15 years, receiving up to 1400 units every 3 mos. I have also suffered with Dysphonia for many years.
It was finally suggested to me that I have DBS surgery, in 2012. It took me a year to think about it. On 2/8/13 I had DBS surgery. Went home the following day. Within a couple of weeks starting noticing drainage from my wounds. Went back to the UIHC, they immediately performed emergency surgery. They cleaned off the wires inside my brain. Put me on IV antibotics for the next 7 weeks, at home. Then when I went in to have the Medtronic device programmed everytime they would try to turn in on. It would send me into a full body Dystonia episode. This went on for several months. I also felt electrical shocks in my head. I became allergic to metal. I'm still allergic to metal. Hey...I am in no way against DBS surgery!!! It helps so very many people. Don't get me wrong. I just wasn't the right candidate. Maybe it was due to my infection. I really don't know. But, one has to remember that DBS is brain surgery. You must go into it with eye's WIDE open. In my opinion, (this is only my opinion) look at all other options first. Then if you feel as if you've tired everything else. Hey, by all means, GO FOR IT! I am a bad example! Don't go by what I went through. I'm just telling my side of the story.
I had my DBS removed on 1/24/14. Now, I'm back to square one.
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