This is the website for the pain clinic I am going to. People apparently
come from all over Canada and the U.S. to go to this clinic. The Head of the
clinic (because I HAVE LOOKED UP HIS NAME ON THE INTERNET), IS THE HEAD OF
PAIN MANAGEMENT FOR THE Canadian Medical Association. I am hopeful that they
can help me, and if they cannot, will refer to someone who can. The new
neurosurgeon I am going to not only specializes in dystonia, but also pain.
Here is the site for the pain clinic:
www.rothbart.com
I will be seeing an anaesthesiologist/ back specialist. The clinic is 1/2
hour from my Aunt's house, and if they offer treatment suggestions after
doing tests, I will stay with my aunt/uncle for the summer.
Am in the process of making notes to take with me of treatments tried and
true, questions, etc.
Have also called the social worker who deals with the neuromotor clinic at
Alberta Children's (where my rhizotomy was done) to see if they would be
willing to experiment with different meds in a pump. I also want to try
baclofen again-- more for myself than anything else, since I think second
trial was strange/unfair, but if a treatment comes up that is better, I
would definitely be willing to try that, instead....
Will keep everyone posted on my pain meds, the SWASH BRACE, Intrathecal
therapy, and am still waiting to hear if they will build me a gait trainer
with Hart Walker bracing... In short, I won't give up...
I can't, even when I have a bad day. It might be hard, but stopping is not
in my nature. Can't wait to hear about the gait trainer. I want so much to
walk.
Maybe sometime this week,
Jenn
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