Mollie
A 21 year old friend of mine has the diease that is called Dystonia. She has had this diease since 1993. She has had the surgery procedre were they go in and fuse certian parts of the brain together to help get back movement and her gait back. The proceder seemed to help for the first month but that was it after that she seemed to get worse. She has also had the botox injection and has taken Baclofen orally ever since she has been diagnosied with this rare diease. About two months ago she had the baclofen pump put in her to adminster the med by liquid into her body better. The pump seemed to help for the first two weeks and then the tubing got binded up inside her. The doctors said that things like that happen so she had the tubing straighten but by the time they left the hospital 2 days after it had been fixed it did the same thing on the way home the same thing happened. If anyone has any suggestion on surgery procedures, a doctor that could help are know anything that can help to keep the baclofen pump tubing in place, are even any information on Dystonia could you please let us know. We do not know what to do next so any information will be appericated. Thank You, MMU