Hi Kyle,

I am not going bacck to that team. Ironically yesterday I asked about a
morphine pump (I am now thinking that half baclofen/other muscle
relaxant/half morphine might worj best). I was told they would not
consider this, would not give oral meds, would not try another intrathecal
antispasmodic. I see a very good physiatrist in Ottawa who specializes in
pain management. I have called him and made an appointment, but have also
asked  that he call me back if he can--even though right now it is long
distance. I have tried to get into pain clinics for years but keep getting
told I don't meet the criteria, for some dumb reason. I will see what he
has to say.

I have also contacted the social worker at Alberta Children's Hospital who
works w/ the surgeon who did my rhizotomy to ask uf they can help me at
all... again, I will let everyone know what happens. I too, think a pump
is the best way to go once I find the optimum pain medications to help me.
Maybe its not baclofen that is the answer, or the entire answer, but
something is... These doctors did not even give me a chance.

Here is a letter I wrote to DR. delaney, my physiatrist here, who has
known me since I was 16:

Dear Dr. Delaney,

Please forgive me for e-mailing you, but I still cannot sleep from back
pain, and since Dr. Strong has already spoken with you via telephone, I
need to tell you my own opinion about the "placebo controlled trial" I
have just been through as testing for Intrathecal Baclofen. I am writing
to ask your support in finding another Intrathecal Baclofen team to work
with me. While, upon reflection, I think that the intentions of Dr. Strong
were good, I remain convinced that some form of intrathecal therapy must
be better than constantly taking medication.

When I was given my first injection on February 19, 2002, Dr. Strong hit a
nerve in my back that caused me to be in a lot of pain. The pain somewhat
lessened with ibuprofen (the only thing that they would give me during the
trial). On Wednesday, February 20th, I had a day of rest, and took a lot
of medication, such as morphine, oxazepam, clonazepam, etc. The morning of
my last injection (February 21st), Dr. Strong chose to go in the same
area, and hit the same nerve again. He said it was not really a big deal,
but I was in agony. I wrote on all of my pain sheets that my pain was more
than usual. I wrote that it was being affected by the nerve pain, and that
I could not clearly differentiate between which was "normal everyday pain"
for me, and which was this nerve pain. It was severe, and the nurses
watched me cry. iT AFFECTED MY WHOLE BODY, AND CAUSED SPASMS. I also got
very dizzy, and there were some times during the trial that I was truly
unble to see. I knew I was getting the real drug (even though I did not
tell Dr. Strong this, I knew because I needed the nurses help jut to get
to the washroom, did not feel safe showering independently, etc.) I do not
think that the trial was really fair because baclofen was not created to
deal with nerve pain, only spasticity. I am also concerned because if
dystonia is really causing me pain, it would take more medication, and a
continuous infusion over 2-3 days to take any pain away or see any
improvements.

I have never been in so much pain in my life and am still awake, in spite
of taking oral morphine, clonazepam, etc. This is because I was unable to
take my medication during the trial. What hurts me even more though, is
that Dr. Strong promised his help, but when I asked him about pumps
containing other medications (morphine, etc), he said he would not
recommend it, and stated that he had saved my trying to find a physician
in Ottawa to refill the pump. I asked about oral medications for dystonia
as well, but he said that he was "not a physiatrist". So now I feel as if
I am left in more physical pain than when I started, with no answers.

I still think there is a great possibility I could benefit from
INTRATHECAL THERAPY, but again, I was not given the choice or the chance.
I don't think I should be penalized for being honest and writing down what
I was really feeling at the time (which was that the nerve pain was, and
still is, excruciating. I told the team this was not normal for me, but due
to the manner in which the injection was done, even though Dr. Strong said
it was "no big deal".

How can I truly judge a decrease in pain when a physician is just
increasing it? He irritated the same nerve twice.

I asked about other Intrathecal medications, oral medications, etc, but
was told it was not their responsibility. I would like the opinion of
someone who knows about Selective Dorsal Rhizotomy, Intrathecal Baclofen,
Dystonia and cerebral palsy. I have written to Dr. Albright to ask if he
would consider seeing me, or if he knows of anyone in Canada that would help.

I am not so much upset at being told no in regards to Intrathecal Baclofen
as I AM BECAUSE i think that the results were scewed through no fault of
my own. I am at peace with the fact that the team in London does not want
to help me-- surprisingly one of your most teary patients has not cried at
all-- but I DON'T THINK THAT WHAT WAS DONE WAS RIGHT, ESPECIALLY
CONSIDERING I WAS HURT MORE BY THE PHYSICIANS HAND.

Is there anyone that  you know of who might help me? I KNOW I CANNOT KEEP
TAKING MEDICATION...

Thank you so much for listening.

Jennifer