Botox - yes, the same Botox that Hollywood stars get to melt their wrinkles away also helps in treating dystonia. It's because Botox temporarily paralyzes the muscles it's injected into, which helps greatly to reduce the spasms that dystonia creates. This was actually the first treatment I had. Unfortunately for me, it didn't work. After several injections, my (former) doctor requested a blood test to see if I had an antibody towards it. It came back positive. A couple of years later, I learned from another neurologist that my first neurologist probably gave me the antibody by injecting Botox into me so often (it's supposed to be given every 3-6 months. I was getting it every 3 weeks because the neurologist kept thinking he hadn't injected the right muscle(s)). So, maybe for a lot people, Botox will work, but it didn't for me.
Medication - there are several different medications that can be used to treat dystonia. I tried several before finally finding the right one for me. And even after finding it, it took a little more time to get the dosing right. Medication has definitely been a God-send for me. The downside is that I have to take it four times a day (because it wears off). That's sort of a drag, but hey, if that's what it takes, that's what it takes. I can tell when it's starting to wear off. It's a Parkinson's drug, so just like with that disease, when it starts to wear off, I start having spasms again and more difficulty walking.
Physical therapy - I have done this several times over the years, usually for 6 months at a time. I've even done water therapy, which I absolutely love :) For me though, after a good stint, I hit a brick wall in which I don't get any better. It's highly frustrating!! However, I know that the point of physical therapy (at least for me) is to keep me from losing any more function and to strengthen what I do have, so I continue it (although, not on any regular time table).
Orthotics - yes, I have tried them, but in all honesty, I couldn't fall right in them - haha! I was actually afraid of doing more harm to myself wearing them then not. I shouldn't say anything bad about orthotics though because my cousin makes them (actually, he makes prosthetics) :) I really don't have anything against them, they just didn't work that well for me. Like I said, when I did fall, it was in an even more awkward way than usual because the orthotic kept my ankle and foot from bending. Maybe I should get falling lessons from someone :) One of these days, I may try it again and it may be awesome, but for the time being, I'm not using one.
Deep brain stimulation - No, I have not done this! It does intrigue me though. It hasn't been officially recognized as a treatment for dystonia, like it has been for Parkinson's. If I hadn't already been through two unnecessary brain surgeries already (I make that sound so dramatic! It was actually just to get a shunt put in and then when the first shunt failed, to get it taken out and a new one put it - it's probably the "easiest" of brain surgeries!), I may be quicker to jump at this, but having been through those and lived through the after effects, I'll wait until there's more research done on it and until more people have gone through it. Yes - I'll let someone else be the guinea pig :)
I think that's enough for one post! I'm very blessed to have been given the opportunity to try several different treatments and to also be given control over what I do and don't want to do. For the time being, I'm fine taking medicine. I'm willing to admit that I subscribed to "Neurology Now" magazine and I'm always looking for new treatments. Who knows, maybe I'll even do deep brain stimulation at some point down the line! I am thankful though for doctors and scientists and researchers and people with incredible knowledge about the brain, for I truly believe that God can use them to come up with a "perfect" treatment or cure for dystonia!
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