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Is Spinal Fusion Surgery sucessfull with severe dystonic spams

cheney Member Posts: 3 Listener
edited June 2014 in Cerebral palsy
I am hoping that somebody out there can help me. My 18 year old daughter has generalised athetoid/dystonic cerebral palsy due to lack of oxygen at birth. During pubity the Dystonic side of her pattern of movement seemed to take over. She would raise her right hip, arch her back (almost jack knifing backwards) and twist violently all at the same time. She would sweat and scream and it was unrelenting, and totally heartbreaking. A year ago she was fitted with a Baclofen pump, which has reduced the dystonic spam considerably, although we are still trying to adjust the dose to get the best result we can.
In the meantime she has developed a severe scolosis of the spine, which is not only curved but also spirals. She also has a fixed lordosis and pelvic obligotory. The spinal surgeons are keen to perform corrective surgery using spinal rods and fixing these rods to the pelvis.
Dispite the baclofen pump my daughters pattern of movement is still very much thrust into extension and twisting as she goes, particularly when ill, distressed or in pain. (period pain for instance)
The surgeons say that the scoliosis is 50% correctable at the moment, but what I fear is that with rods she may not be physically able to move in her pattern of movement and would be even more uncomfortable. The force has to go somewhere. What if the baclofen pump failed and she started to try to twist and jack knife like she used to and how would the surgery heal with a person who is constantly moving? I have spoken to dozen of parent whos children have had spinal fusion surgery but none of these youngster had such a pronounced pattern of movement as my daughter.
Is there arybody out there who has experience good or bad of spinal fusion in young people with such huge Dystonic Spasm. I just want to do whats right for my girl.



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