Surgeries
 

Families Should Be Cautious About Surgical Procedures, Doctor Warns
 

Families who are considering surgery such as pallidotomies, thalamotomies and deep brain stimulation to treat movement disorders and other symptoms of HSS should proceed with caution, advised Dr. Leslie Shinobu of the Movement Disorders Unit at Massachusetts General Hospital.

Some surgeries, such as pallidotomies, which involve making a lesion on the brain, can produce good results for a month or even a year, but the patient’s condition can worsen after that, Shinobu told participants at the First International HSSA Family Conference. "In HSS, there may be a few who benefit...but surgery doesn’t stop progression of the disease," Shinobu said.

She said the vast majority of HSS patients would not be good candidates for surgery. One couple saw dramatic improvements after two pallidotomies on their son, but three years later, the symptoms returned, although not as severe, Shinobu said.

Each case is different, but she advised that surgery be a last resort after all else has failed. "It’s a hard call," Shinobu said. But "as long as there are other alternatives and your child is not in grave danger, hold off."