I had posted a question in first week of September and have been mulling whether to go ahead or wait for surgery. We finally called the doctors office last week to schedule and they are looking for dates.
The problem we have is our 3 year old is non verbal and has diagnosis of autism as well, so we are not able to figure out if his symptoms are due to Chiari or just Autism( well our experience has been that every thing under the sun can be attributed to autism).
But we spoke with Dr.B in NY recently, and our surgeon in Minneapolis(both on the list) both think our son is a good candidate. Mainly bcoz he is showing weakness, does not want to hold stuff or play stuff like kicking a ball, ride a bike etc.. which he used to do previously, has a preference to sit with support or in a W, prefers to isolate, and sensitive to sounds/lights. We got a spine MRI as well which came back clear. We talked with a geneticist who said he does not see signs of ED syndrome. His Brain MRI shows tonsils at C2, very crowded, no posterior csf flow, and one doctor pointed out one had descended more than the other. They also think it might help him function better.
Just wanted to know any opinions or thoughts, nervous about surgery, heard about complications in kids like requiring repeat surgery and cervical instability.
Thanks Selma for responding to my earlier post