new dx chirari malformation 1

[Carianna98]

Our daughter is 3 1/2 years old. She's been dx'd with Right Coronal Craniosynotosis (CVR and FOA to correct at 10 months), PFAPA (T&A seemed to have worked), recently diagnosed with Breath holding spells (3 in the last 4 months) and today--- Chiari Malformation 1. Her cerebral tonsils are 7 millimeters into her spinal canal. Is this similar to anyone else's experience? Can we anticipate another surgery?

[selmaS]

Hi and welcome to the Chiari forum.

I know this is very disconcerting information for such a young child.... but surgery is only suggested if there is a CSF obstruction....Chiari is not the herniation but a malformation of the skull....there is no way to fix it away with surgery...surgery is  done to restore CSF flow and slow progression of the condition. How far the tonsils have herniated are not as important as to how wide they are and if they are creating the blockage...AND what other related conditions she may have.
I am not aware of others (children) from this forum to also have the Craniosnotosis DX as well.