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Reply To: | St. John's University Cerebral Palsy List |
Date: | Fri, 8 Feb 2002 09:50:50 -0500 |
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Try diazepam. If you become dependent, so what? Beats the heck out of
spasm pain, and you can always titrate slowly away from it if a better med
comes along.
-----Original Message-----
From: Asdis Jenna Astradsdottir [mailto:[log in to unmask]]
Sent: Thursday, February 07, 2002 7:32 PM
To: [log in to unmask]
Subject: Re: Medications for Dystonia?
hi Jenny. I have Dystonia and use deep brain stimulator which stops
dystoniia about 50-60 %. It changed my life for good. it is not a cure but
better than nothing. Try this: Dr Tipu Aziz [log in to unmask]
He lives in England. He did my surgery.ok? Asdis.
At 08:18 7.2.2002 -0500, you 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
Asdis Jenna Astradsdottir.
[log in to unmask]
Iceland.
:
Faith, Hope and Love.
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