Dear Mag,

You are entirely right. I did forget to tell the neurosurgeon that I did
not need to take any oral medications for pain until 12 hours after
Intrathecal Injection. So I wrote him another letter, with my apologies
for writing him again. Here it is:

Dear Dr. Parrent,

My apologies for writing to you again, but I also thought it important
that you read of what I thought the success of the Intrathecal trial was--
not just what is written in my hospital chart. These are excerpts from a
letter that I wrote to my Internet support groups when I returned home
after Intrathecal trial on January 25th. I did not have to take any pain
medications for 12 hours after intrathecal injection. I am now back to
taking 5 mg of morphine every one and a half hours, in addition to 45 mg
Oxazepam and 4 mg Clonazepam per day. Essentially I sleep most of the time
because of all  the medication, but if I do not take it, I am crying in
pain. It makes going to school and generally participating in life very
difficult. This is why I had hoped you could help me while I was home, so
that my semester and the quality of my life for the next four months could
be better. Again, if this is impossible, I understand, but would not ask
for early treatment were I not in agony. I ASK THAT YOU NOT SHARE THIS
WITH ANYONE EITHER BY LEAVING IT IN MY MEDICAL FILE OR BY SPEAKING ABOUT
IT TO DR. MJ STRONG, KAREN FINDLATER, OR BREEDA O'FARRELL.

Sincerely,

Jennifer Zubko

Hello Everyone,

My apologies for writing this to you all at once, but I am so exhausted
after my long day of Intrathecal Baclofen trial that one universal note is
all my tired fingers and aching body can handle. The TRIAL ITSELF WAS A
GREAT SUCCESS. I did NOT have to take oral medications (morphine,
clonazepam, Oxazepam or Amytriptyline for 12 whole hours after Intrathecal
injection. There just was not any pain to speak of. I got a reduction in
tone with only 50mcg of Intrathecal Baclofen. The therapist today again
confirmed that the writhing movements I have in my arms, legs, face, and
sometimes eyes, is indeed secondary dystonia, While the injection did not
lessen their frequency, it did lessen their intensity. The intrathecal
baclofen injection also somehow got rid of my piriformis pain syndrome
temporarily--- and I could feel the sole of my right foot and the back of
my right leg for the first time in eight months.

My gait improved as wellvery little intoeing or scissoringa benefit I did
not expect since I has thought I had reached my full potential for
improvement of gait post-selective dorsal rhizotomy. I did not even
require a walker or extra support to move or transfer, and the therapist
had to stop me from running down the hallways independently! My walking
speed and number of steps taken in a certain time period actually
increased as the day wore on, and the drug itself was wearing off. I found
it so much easier to climb stairscould do so one foot at a time, rather
than placing two feet on one step as I normally would. It was easier to
roll over, to go from sit to stand. My posture in my wheelchair and
sitting tolerance improved greatly post ITB injection.

I had no real side effects ( urinary retention, headache, etc.). My
handwriting improved as well, and I was once again able to sit
cross-legged and bring one leg up to rest on the opposite knee to do up my
AFOs (leg braces). Usually I am forcing my feet in them in a downward
motion, and this sometimes hurts a lot...

I never in my wildest dreams thought the intrathecal baclofen injection
would bring with it so many positive outcomes, and I am sure it is due to
all of your prayers. Please say a few that  prayers that surgery occurs
sooner rather than later




Again, my apologies for writing to you. You need not respond to this
letter, but I feel it is important to be truthful with you if we are
required to work together.

JZ

What does everyone think?
Jenn