Dystonia Diary

This is what it's like to have cervical dystonia - the good, the bad, and the ugly. Actually, there's nothing good about it.

Wednesday, February 03, 2010

Botox update

Got about 14 shots of Botox yesterday morning. I told my Dr that 80% of the pain was on the left side of my neck, and that the muscles on the left side of my neck were tight, hard, and bulging from my head turning so hard (to the right). He injected most of the right side of my neck (the wrong side) again. If I get the same results that I got last time (my dystonia was barely affected & I couldn't turn my head to the left), I'm going to be angry.

The Botox was done about 40% on the left side (the correct side), and 60% on the right side (the wrong side). Hopefully it won't turn out too bad this time. At least I get good pain relief until it wears off.

At my next follow-up, I'm going to ask my Dr about getting a consultation with a physical therapist who knows about dystonia, and knows how to treat it. Maybe I can get some exercises that will be more helpful than the "muscle strain" exercises I got back in 2003.

By the way, I recently got a recommendation to check out a site called Disorder.org. It's a good resource for useful (and easy to understand) information about a wide variety of disorders. There's a link to it at the top of my list of links.

And by the way, my spell-check keeps telling me that dystonia is misspelled. I guess spell-check hasn't heard of dystonia.

Monday, February 01, 2010

Botox day tomorrow

I'm getting more Botox tomorrow, and I hope my Dr does it right this time. Last time, he shot most of it into my right sternocleidomastoid muscle, and I couldn't turn my head to the left. My dystonia is pretty bad now because of that (my head turns hard to the right, leans to the left, and pulls forward, and my chin tilts up), so I'm going to ask him about putting most of the Botox in the left muscle this time. If he doesn't agree to do it that way, I'm going to ask my insurance adjuster if I can get either a second opinion or someone to do some research on the sternocleidomastoid muscles.

My Dr won't listen to the research I did because it was all online. He says you can't believe everything you see online because the internet is full of misinformation (duh!), and that there are lots of people who want to take advantage of people like me. "People like me"? Sheesh! Give me a break. I'm not stupid, and I know how to think and do research. Guess I'll have to check the medical books at the library. He can't argue with them!

I haven't posted much because we lost our cable tv/internet service, and have to rely on a Sprint Air Card (can't use it too often), and Starbucks free WiFi (requires a coffee purchase). I'll, post as often as I can use the air card or can afford the coffee.