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