I can understand all this, and like I said, I totally sympathise.  However,
the second trial was more like the "real" thing and I think that the results
is what they are going by.  I've had pain from pinched nerves and do agree
with you they are extremely excruciating. As I said in my note to you I
think they treated you horribly during the testing and so feel you should
think about filing a complaint.

This happens all the time - originally a procedure is recommended, and the
patient goes through initial trials or testing, only to find later it won't
work.   It has happened in my case, it happened to my father, and it happens
to others. The disappointment and money expended in my case was crushing. My
father's case was his cancer treatment; the experimental treatment they gave
him didn't give him quality of life, nor did it decrease his pain.

I only hope that the pain clinic can get you off the morphine and on to
something else that will work.  That is what they're for, to help you with
pain management and maximise your ability to function.

Kat

   ----- Original Message -----
From: "Jennifer Zubko" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, March 17, 2002 10:52 AM
Subject: Kat- Why I WANT 2ND ITB TRIAL


> 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