Jenn,
I'm sorry you are angry with what I wrote. I never
said you didn't have dystonia just that dystonia isn't
what the BPump trial was set up for. I'm not
disagreeing that the london team hurt you with the
lumber punctures either but thier main purpose was
spasticity not dystonia.I can't change the way they
ran the trial but from all of your posts from the
beginning it was seeking pain relief from increase
spasticity after the sdr. Because your diagnosis
changed after starting the Bpump process desn't mean
the reason for the trial changed.
Joanne
--- Jennifer Zubko <[log in to unmask]> wrote:
> Dear Joanne,
>
> Your writing only upsets me because you only seem to
> think like the doctors
> do. YES THE DYSTONIA DIAGNOSIS WAS FOR ME. THEY
> MENTIONED IT MANY TIMES (AT
> LEAST THE NURSE AND PT DID) WHEN I WAS AN
> OUTPATIENT/InPATIENT. THIS LETTER
> WAS TO MY DISABILITY PENSION, AND THEY CANNOT LIE TO
> THEM. I think a patient
> should get treated for what the physiciamn feels is
> thew prim,ary
> diagnosis-- in my case, dystonia, since my selective
> dorsal rhizotomy got
> rid of spasticity. If the trial they did was for
> pain, they should not have
> caused more with the botched lumbar puncture(s) and
> called it a true trial .
> I don't worry about me. I have a referral to another
> surgeon, and would not
> let the London team do surgery if you paid me.
>
> Montreal, here I come- with questions of dystonia in
> the referral. I just
> think if a physician thinks you have another
> disorder they should treat you
> for it. So you are wrong. I would never go back to
> London. Never put words
> in my mouth. You have angered me more than you know.
> Jenn


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