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Subject:
From:
Kathy Pink <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Thu, 7 Feb 2002 10:46:59 -0800
Content-Type:
text/plain
Parts/Attachments:
text/plain (54 lines)
What's Dystonia?






--- Jennifer Zubko <[log in to unmask]>
wrote:
> Hello Everyone,
>
> As most of you know by now, my treating
> physicians/ nurses here in London
> now think that the majority of my probems
> related to excess muscle tone
> and pain come from dystonia and not spasticity.
> The selective dorsal
> rhizotomy got rid of the spasticity, but it is
> the dystonia that causes
> painful spams, constant movement, inability to
> sleep, etc. No one knew I
> had dystonic movements until after my
> rhizotomy. Now that I realize I must
> wait months to have the Intrathecal Baclofen
> pump implanted, are there any
> medications besides oral baclofen that have
> helped with regards to
> dystonic movements and pain for your children?
> I can't even describe the
> pain. I am taking morphine but even that has
> minimal effect because my
> muscles are so tight.
>
> I ask you not to include Baclofen in any lists
> you might make for me
> because I have developed tolerance to the drug.
> I have called the nurse
> who works with my neurologist about this and
> left a message. Figure it is
> better than e-mailing the man, LOL, but wanted
> your opinions.
>
> Thanks,
> Jenn


=====
My Ya-Hoo ID:  kathyjopinkus

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