Dear Jen,
You know I've always been supportive in your quest to
improve yourself and for pain relief and I sincerely
applaude your efforts in self advocacy. All the same
you are not going to like what I'm going to say. I
agree with Bobby that you shouldn't persue more
contact with the Londaon team about the BPump. When
you were accepted for the intial trial it was for pain
relief due to increase spasticity. This is what the
double blind study was set up for. The itial trial
before the double blind study was also a small amount(
probley the same as the dbl blind) and it did indeed
give you some relief. The dystonia was never part of
the equation in the  orginal Bpump evaluation. I do
believe it was orginally thought the pain was the
pisform(sp) nerve. You found out about the dystonia in
a very round about way and through a  letter that
wasn't  meant for you. I'm not sure the London team
got the letter either and the first they may have
heard of dystonia was from you after you read the
letter. Because you read the letter does not mean the
London team was suddlenly going to change the trial to
treat dystonia rather than spasticity. It was set up
to see if you would get relief from the spasticity
only. I'm sure it would be music to your ears to hear
London say they were wrong but it won't happen because
they did what they said they would do, test to see  of
the bacoflen would reduce spasticity. I really think
you've burned that bridge. You seem to have a pain
clinic team very much in your corner and willing to
work with you and it may indeed include a pump for
pain relief. Stay with them and work with them. Don't
burn that bridge as well by doc shopping.
Joanne
--- Jennifer Zubko <[log in to unmask]> wrote:
> Hi Everyone,
>
> I am really struggling-- both with completing exams
> and assignments, and
> with something else. I write to ask for advice.
>
> Here is the question: Should I write to the Movement
> Disorders team in
> London (made me go through double blind study for
> intrathecal baclofen,
> saying they wantyed to see if it improved pain, then
> hit nerves with the
> lumbar puncture. I knew what day I was given the
> medication because I had
> all the bad side effects. I then learned in a letter
> to a third party that I
> was diagnosed with dystonia, am  now struggling with
> oral meds, exams, etc.
> While I recoignise the amnou t of drug they would
> have given would not have
> helped me (from, reading  many many articles) it
> does not seem fair and I am
> still upset over it... Any advice on what to do? Am
> so downhearted, and need
> help ASAP FROM A SURGEON. What would you do?
> Thanks.
> Jenn


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