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Reply To: | St. John's University Cerebral Palsy List |
Date: | Sat, 16 Mar 2002 23:35:20 -0500 |
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Hi Rayna,
First, a hearty welcome back and hugs for you. Glad that your computer
finally got fixed. If you have not been able to post to the list, you might
niot know that I got denied my intrathecal baclofen pump in the end-- they
said it did not help with my pain or walking, but hit my nerves while
givuing me both the placebo injection and the real baclofen. I was screaming
in pain. I will never forget it, or forgive them, because I still believe it
could help me. I was also denied any pain meds during the second study, and
was screaming in pain. Was niot impressed. I am now on morphine, but hate
the side effects. They diagnosed me with dystonia while I was home, but gave
no treatment options. My doctors are even denying me a second opinion after
all this. I know the baclofen helped the first time, but I was able to take
my meds then.
I am on a long acting morphine now, but still hate the side effects, though
they kill the pain. Still have spasms in my face, hands and legs. No clue
what to do, but I referred myyself to a world-renouned pain clinic in
Toronto and have an appiointment over Easter weekend. Will let everyone know
what they say. I will figure this out eventually, but it really gets me
down, because doctors have no clue why I would give away my function for
pain relief.... not even DR. ALBRIGHT IN PITTSBURGH. I have cried and cried.
Please say a few prayers for me that I will find some answers. I have tried
things conventional and unconventional over the years, and don't know where
to turn. I really need a few angels as I finish my last few weeks of school.
Thank you.... and sorry for venting in a welcome back message. Please share
your story with us.
Jenn
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