Dear Kat,

Here is why I want a second opinion regarding Intrathecal Baclofen. I
thought I would share it with the list. First, when they did the initial
trial on January 25th, they said I WAS A GREAT CANDIDATE. I was walking
better, moving better, etc. I had followed advice I had seen on the Internet
regarding not taking my narcotics for a few days before the trial. There can
be serious drug interactioond, clumisiness, dizziness, stumbling, etc. They
did videotapes of me 6 times (meant 6 trips returning to the hospital), and
still decided the pumpwas the way to go for me up until the 7th of February.
I took my meds as needed, so long as it was written down by the nurse, as
the efficacy of the drug wore off during the first trial.

During the second trial-- which happened to fall during my school
vacation--- I was given 2 injections-- one was backlofen, the other the
placebo. THEY SAY that the placebo helped reduce my pain, but that first
day, I went into the hospital fresh, having taken all my meds, gotten sleep.
He hit my nerve and caused spasms so bad that 2 nurses had to hold down myy
legs. I was given ibuprofen for this-- nothing else, a bad thing for a
person in Chrronic pain. They said to take all the meds I wished during the
night, and I took them up until 4 hrs. prior to my second injection. I kew
it was the real drug because I was dizzy, clumsy, felt drumk, unable to
walk. I did not know at the time about all the drug interactions, etc, but
kept writing in my pain log that the nerve pain (that they caused) was so
severe, I could not differentiate if  whatever they gave me helped or not.
Because he irritated the very same nerve, I was in excruciating pain. The
nurses wanted to give me my morphine but could not. I was creaming and
crying, and my body was stiff just from that--- anyone who has had sciatic
pain will understand this.
Then they proceeded to call my doctor to tell her the news before they even
told me, would niot give me alternatives for treatment (morphine trial, pain
stimulator, etc). I get back to Ottawa to find a copy of a letter sent by
the doctor on the 7th of February, (to an outside agency, not to me) saying
they want to do pump implantation to treat dystonia-- no mention in the
letter of my CP AT ALL..   If they want to do that, testing must be done by
external oump, implanted in the operating room--- not by lumbar puncture. So
this is why I want to be seen by a new team regarding the pump. If it turns
out that another intrathecal medication (morphine/clonodine), or a
combination of the baclofen and one of the above would serve me better, then
so be it... All that seconsd trial proved to me was the side effects of the
drugs when taken with narcotics-- and oner morphine pill does not get out of
your body for three weeks-- and that it does not help with the nerve pain
that they caused.
And I take more than one pain medication now. I think it would be
unrealistic if just the baclofen helped me, which was what they were trying
to prove, but thats my opinion.
Jenn