Hi everyone!
Well this website is all new to me so sorry if im asking questions that may have already been asnwered. I guess some background info would be nice. My 5 year old son Jojo was diagnosised with CM1 in april. Our Neurologist sent us to see a surgeon. When we saw the surgeon she agreed that he did have CM1 but said at the moment she was more concerned with his head shaped. Long story short he ended up having Craniosynostosis. His skull reconstruction surgey was done on 6/8/12. We went in for a follow up MRI last friday and it showed that the CM1 has moved down to 9mm. We see the surgeon today for the final decision on surgey. He does still have severe headaches as well as memory problems and fine motor skill issues. So my questions are with it being herniated 9mm is that alot for a child? What are the risks of surgery? Is this a life long thing? Will the brian ever move back to where it should be? Is his life span shortened because of this? How long is the surgey and recovery time? Will he be restricted with his activites from now on? Im sure there will be more questions but thats all i can think of now . Thanks for everyones time.
A Nervous mom