Hello, world! I suppose I’ll use the generic start-up post provided by WordPress. My name is Shelly Frampton, I have Cervical Dystonia and I’ve decided to blog about it. I wish I would have done this a year ago, but here we go anyway!
I had my second dose of Botox today. But perhaps I should give a bit of history first… When I was about 20 or 21, I remember my neck having these really odd little twitches, embarrassing and unnerving. I used to pretend that my hair had tickled my neck or the tag in my shirt was itchy. In fact, I once had a friend cut the tag out of my shirt because the spasm was so obvious and embarrassing. I knew that it wasn’t the tag, but I had no idea why it was happened and for some reason was humiliated by it.
Gradually it became a steady pull to the left. I found that I could only hold my head straight if I held my hand against the left side of my neck. I worked in retail at the time, so running a cash register one-handed was pretty challenging. Also, people were constantly asking, “Oh no, does your neck hurt?”, to which I would reply, “Yes, a little…” It made me very self-conscious and eventually I began to have panic attacks. I left work on one occasion it got so bad. I made an appointment with a doctor hoping to find an answer. I was told that I had nothing physically wrong with me, but that I needed counseling. I was referred to a psychiatrist.
I went to my psychiatrist appointment, really disappointed. I knew that it wasn’t in my head, but everyone kept saying, “Stress can do funny things to your body”, so I bought in. The psychiatrist heard my complaints and was very confused as to why the doctor would have sent me to see him. He decided it must be stress related and suggested that I shrug my shoulders up really tightly, take a deep breath and then let it all go. He also taught me some relaxation techniques, which did help me to relax. I got to the point that, when my neck would start to pull, I would tell myself, “Here we go again! It’ll stop soon, just relax.” After what was probably a few months (I can’t recall just how long), my neck finally stopped and I was symptom free for about 8 years.
Fast forward those 8 years… I’m now 30-years-old and working in a doctor’s office. My new husband and I have just moved from Alaska to NJ and we’re living with my in-laws until we get a place of our own. And my neck starts it’s thing all over again. Now, at this point, I believe that it’s stress-related, considering my circumstances and what my previous doctor had told me. So I let it go for a while. But it gets to the point that I can no longer tolerate it and I talk to the doctor that I work for. Very casually he says, “Oh, yeah, you have Spasmodic Torticollis!” I broke down in tears. I knew there was a medical reason for my neck problems, that it wasn’t in my head! He gave me Baclofen, a muscle relaxer, which worked right away. Weeks later I stopped taking it and my symptoms stayed away for another 8 years.
Now, just over a year ago, the pulling started again. My husband actually noticed it first; “Why are you holding your head sideways while you’re reading? Is your neck doing that thing again?”. Within weeks it was full-blow ST again. I went back to the same doctor who gave me Baclofen once more. It did nothing. He sent me to a neurologist who gave me Trihexyphenidyl. It’s usually prescribed for Parkinson’s Disease, he tells me, but can be effective (and inexpensive, as I had no insurance at the time) for ST. It gave me some relief, but when I was taking enough to make a difference in my neck I had horrible side effects (major forgetfulness, inability to focus, etc), and it didn’t make it effective enough that I could go without a neck brace.
Eventually, I was able to see a specialist at Pennsylvania Hospital‘s Movement Disorder Center, who scheduled me for Botox injections. The first time I was injected was December 2010, and it made a HUGE difference. I still had to use the neck brace, but where my neck had previously pulled my chin almost all the way to my left shoulder, it was just a slight pull to the left, and the pain was significantly less.They start you at the lowest dosing, of course, until they see what will work for you.
So that brings us to today. Today was my second dose of Botox injections. Insurance will only pay for the injections every three months. I’ve read that it can take 2 or 3 tries with the Botox to really get the full benefit of it, as they dial in the dosage and the correct muscles to inject. I feel pretty confident that the doctor got it right this time, and I’m hoping that within the next few days I’ll notice a major difference. If not I know I have an appointment in June, and maybe the 3rd time will be the charm. In the meantime, I’ll practice some of those relaxation techniques I learned. If it doesn’t help, at least I’ll be relaxed while I wait.
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