Monica Archer’s Story
Thank you very much for your helpful info. I believe as you do, that mine was a predisposition to dystonia. I recall my Dad’s father, my paternal grandfather, had head movements or tremors, similar to mine. I don’t recall him having a neck problem with that, but it was so long ago. He used to be a boxer, so maybe it has some relation to all this. I’ve even asked my parents to try to recall any childhood accidents I may have had. The only one I really remember that may have significance is sitting in an old canvas fishing shanty that was set up next to our garage. I was about 9 years old. The roof caved in on me while I was sitting inside it and the boards hit me on the head – 2×4’s and 4×4’s most likely. My sibling and I, along with friends, used it as a fort to play in. Ever since then I didn’t want anyone to touch my head or even kiddingly rough up my hair, etc.
It was around this time that I also recall my voice shaking and my shoulder rising at the same time. It was during a usual sibling rivalry when we were shouting back and forth at each other that I first noticed it. Of course, they mocked me, raising their shoulders up too. I just couldn’t figure out why this was happening to me. And, most of my life, I felt like I was some kind of freak.
In 9th grade English class, we were required to read out loud. This never bothered me until one day before Thanksgiving – my voice trembled. I was shocked and scared and ever since then, I’d shy away from reading aloud in school as much as I possibly could after that incident. I also noticed I had a shakiness in my trunk section of my body, but couldn’t convince my parents or school counselors that I felt something was wrong. Everyone attributed it to “nerves”, even the doctor I had seen once my husband and I began dating. After reading about the various types of dystonia recently, I honestly feel I had some type of it way back then. I even mentioned it to the neurologist who diagnosed me weeks ago, but he didn’t think they were related or significant.
One of my first jobs I had was working for a newspaper. I was an “ad compositor”. This required me to typeset ads and lay them out. Back then, in the mid 1970’s, typesetting was done in strips and I had to lean over a table to put those waxed strips (was used to adhere them) to my grid layout paper. I was about 19 or 20 when I realized I was getting sore backaches. The layout table wasn’t slanted and I stood on a bare cement floor or sometimes a piece of rug. Finally, they got fatigue mats and that helped somewhat. But for 12 hours straight, I was leaning over my work. On occasion, I sat down at their version of a computer back then and typed my ad copy.
In the mid 1980’s I sold advertising for another newspaper and one client was a chiropractor. I mentioned the backaches and did x-rays and an adjustment and told me I had scoliosis – a curvature of the spine. One of my other clients at a restaurant/bar asked me one time if I had a stiff neck and I said no. I thought it was from my winter coat and turtleneck sweater because it was winter time.
By the early 1990’s I began to notice I had some stiff neck problems. My doctor sent me to a spine clinic and they put me through some physical therapy. But in all honesty, I felt more relief from a chiropractor.
In October, 1993, I had the good fortune of being able to travel to Europe for 3 weeks with a cousin. She knew Slovak language and we were able to communicate to most everyone through her. Then we met relatives in Vienna , Austria and Poland . The one cousin spoke the best English. She was also a massage therapist. She told me that I had some problems going on in my neck and that I should see someone about them. That’s when I went to my doctor who referred me to the Spine Clinic. I was told I had arthritis in my spine and some stenosis – narrowing of the spine canal. They figured it was congenital. I recall getting a shot in my neck (cortisone)? – I don’t recall what it was but it brought me some relief). Our insurance at that time only paid for 3 months of physical therapy and then I was on my own for the rest of my life! Shortly after, my husband began working elsewhere and we had a new insurance company.
Then almost a year ago, last December 11, 2001 , I woke up with severe pain in the back of my shoulder, radiating down my left arm and my hand and fingers were numb. My doctor referred me to a neurologist in my town and after x-rays, EMG and MRI, I was told I had a few herniated discs in my neck. They suggested surgery. My husband and I didn’t feel right about doing that. Then this summer, at the end of June, or first part of July, I began to notice my head bobbing – or titubations. I couldn’t sleep – I just couldn’t get comfortable. I didn’t even look forward to going to sleep because it was a battle just to get settled in. I went for my yearly physical this mid-September and my doctor said he’d send me to a neurologist in a bigger city – Grand Rapids . The first one said my discs were bad and he could do surgery – but he wouldn’t because my head bobbing or tremors were caused by something else. He then referred me to the neurologist who, at last, diagnosed me with Spasmodic Torticollis. His office has been just SUPER throughout all of this. The first neurologist wanted me to have an EMG; the other one recommended against it, due to all my movement. The neurologist who made the diagnosis wasted no time in contacting a doctor nearby my home, who is qualified to do the botox injections.
Throughout all of this, my co-workers noticed my head tremors and I, all along, just thought it was a BAD pinched nerve. My boss knew I had herniated discs and that I was going to pursue possible surgery with the first neurologist in Grand Rapids . When I announced to my co-workers that I was diagnosed with Spasmodic Torticollis by the second neurologist and that neither of them would do the surgery things got miserable at work. My boss was finding things wrong with my work and making any excuse to belittle my work. I honestly think he was trying to make me quit my job because, perhaps, he was looking at me as a liability or that I could get hurt at work and collect Workman’s Comp. When my husband accompanied me to our own personal physician (I had already stopped driving by this time) – my doctor could see how much this had progressed since mid-September and felt I should have an indefinite medical leave until the head tremors and neck muscle spasms were under control.
Now – the good news: Tomorrow I am scheduled to be evaluated by this doctor only a few miles from my home and I may even get my first botox injections! Praise the Lord!
Well, Howard, I’ve rambled on long enough. I’ve made several typing errors since my head leans to the right and I’m looking sideways through my bifocals at the computer screen and keyboard. I’m sure you can relate to this. Anyhow you’re the first person I’ve written all this info to. I hope I didn’t bore you. Thank you again for your own support and the Wisconsin Foundation’s support. I’m glad to have everyone with me to share this awful experience with. Time for my nap, so again, THANK YOU and I’ll keep you posted.
Very sincerely from your friend,
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand