Dystonia News - Warning Medical Stuff Ahead
Well, I've seen the doctor. He does think what's been going on with the ribs is dystonia. Instead of the dystonia being just the rhombus muscles like we thought (it is there, just not as severe as thought), it seems the dystonia has moved further down the spine and is presenting in the intercostal muscles of my ribs (the muscles between the ribs). That would be why when they spasm it hurts so much to breathe and why twisting my torso can provoke the spasms. So, he found the triggering nerves in my back and Botoxed the pathway there too. OUCH! Those were some of the most painful injections I got on Friday - I couldn't help but flinch (normally I don't move at all except to take a deeper breath - nope, gotta get away from that damned needle this time). So I'm up to 19 injections and 450 units of Botox.
So my diagnosis has changed from cervical dystonia to segmental dystonia since I now have two adjacent body parts (head/neck and back/ribs) affected. That's what was decided last time, but when the botox didn't seem to help, we weren't sure. We are now. Unfortunately, the dystonia is progressing and I'm not happy about that. We don't know how far it could go and I do have some symptoms of general dystonia on top of it all (fortunately only when I'm tired). If it gets too, too bad, there is always the possibility of brain surgery, but it is going to have to get REALLY BAD for me to want to go there. Like Botox and other toxins stop working bad. But we are nowhere near that yet.
But between this progression and the headache progression last year, Julia and I have had to talk about what happens in the future. Right now I'm only working part time by my office's preference. I'd like to work more hours because I have more work than I can get done in the time allotted. But last fall, until we got the headaches back under control, I was missing one day a week due to headaches. While the rib spasms have been out of control, I haven't had as much energy as I did before May. But I think we have both the headache and ribs sorted out so I don't think I will miss as much work as I did last fall, but having the time off to rest has been nice. But I really want to work. Gah!
S
So my diagnosis has changed from cervical dystonia to segmental dystonia since I now have two adjacent body parts (head/neck and back/ribs) affected. That's what was decided last time, but when the botox didn't seem to help, we weren't sure. We are now. Unfortunately, the dystonia is progressing and I'm not happy about that. We don't know how far it could go and I do have some symptoms of general dystonia on top of it all (fortunately only when I'm tired). If it gets too, too bad, there is always the possibility of brain surgery, but it is going to have to get REALLY BAD for me to want to go there. Like Botox and other toxins stop working bad. But we are nowhere near that yet.
But between this progression and the headache progression last year, Julia and I have had to talk about what happens in the future. Right now I'm only working part time by my office's preference. I'd like to work more hours because I have more work than I can get done in the time allotted. But last fall, until we got the headaches back under control, I was missing one day a week due to headaches. While the rib spasms have been out of control, I haven't had as much energy as I did before May. But I think we have both the headache and ribs sorted out so I don't think I will miss as much work as I did last fall, but having the time off to rest has been nice. But I really want to work. Gah!
S