by Michelle2000 » Sun Mar 29, 2015 5:05 am
Welcome,
I'm sorry you are having problems, but I am glad you found this site. You certainly are not alone. The decision whether to have surgery or not is a hard one, and I agree with Elizabeth that only the very best NS should do it. I would not change our decision for surgery for my son, but even though it dramatically improved his symptoms (constant nausea and vomiting, loss of balance, inability to walk, double vision, etc.) the surgical path created some new problems. He still is completely numb, though only on the left side of his head. The rest of his left-side numbness/weakness cleared up. Rehab is long and hard. Be sure you ask lots of questions as you make your decision. People here are happy to share their experiences.
Best wishes,
Michelle
18 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)