Just a few questions here, My daughter was diagnosed with Chiari in 2011, and it was because I found her scoliosis, during the MRI they noticed she had Chiari, She was 6 at the time. She had her Decompression done that August (she had turned 7 by then) less than two months after find out it was Chiari. Recently we have found out her scoliosis has gotten worse, from a 40 degree curvature to a 50 degree curvature. (She has been wearing her brace 18 hours a day no reason for it to get worse) The Neurologist said it was not from the Chiari. We are going in on July 31st to have the surgery scheduled to have pins and rods put in her back they will not fuse them until she turns 14, so every six months we have to go in and have the screws loosened for her to be able to grow. Has anyone else had this done? What are the limitations on being in school or should I home school her? Is there precautions that I should now about with personal experiences, I know what the doctor has already told me and he never had this done to him and said different people experience different things (like the screws getting caught on clothing or the brace making the screws push in and feelings of uncomfortable). Sometimes it is best to talk to someone who has had this done and what their experience was with it. Any advice would be appreciated. Thank you. (Mystyk's Mom)
Thank you Abby,
I really appreciate the information. Do you have any more information for kids who only get the pins and rod without fusion being done? She will not have the fusion done until she is 14 right now she is 8. Thank you again.