Holding My Head Up High

People who have cervical dystonia know that some things that are easy for others can be hard for us. For instance, getting a hair cut.  I used to have a lot of difficulty sitting up straight in the chair and holding my head still.  Even if I managed to hold it still long enough for the beauty professional to cut my hair, my ear would be trying to make constant contact with my shoulder. There were a few incidents when I had to return because my haircut was uneven.  Often, the beauty professional uses the shoulders to measure hair length, and because of the dystonia, my left shoulder is higher than my right shoulder.  The doctor said this will change over time as the injections take effect.

October 30th was the three month anniversary from my first set of injections.  That meant it was time for a second series with a higher dosage. On that visit, the doctor asked how well I thought the first series worked. I said maybe about 75%, maybe a little bit less.  I still have some tremors from time to time, but I do hold my head higher and people have noticed that I’m standing up straighter. However, due to an insurance snafu, I did not get my second set of injections on this visit. I was so looking forward to the next series of injections because I was going to get a higher dose.  I thought that I’d surely do better than 75% on this go round.

My injections were postponed until November 15th. The day finally came, but it was a little too late.  The old injections had started wearing off. This means that I feel as though I’m starting from behind the finish line.  It will again take another 3 days to 3 weeks to experience the benefits of these injections.  So I’m in another waiting game.

The 2nd series of injections seemed a little bit more painful to me. I asked Dr. Houghton if he ever considered numbing the injection area first, and he said that idea has arisen from time to time. I hope this option will become available someday soon.  When I was at my 75% improvement rate, I was a little fearful of the pain from future injections, but after the 1st set of shots started wearing of, I didn’t care about the possible pain, I wanted the cure.

I did experience one side effect from the first series of injections.  I had weakness in my neck muscles and I had to rest my chin in my hand when I was sitting down because my head would start to feel heavy. He changed some of the injection locations and he said that may help.

Today, two days after the 2nd set of injections, I do feel as though I can hold my head up longer while seated. And joy of all joys, I got a haircut today and I noticed that my head was upright in the mirror and I was able to keep it still throughout my whole haircut.  Wonder of wonders!  I can’t wait to see more improvement within the next 3 weeks!