Hello @ilamanda, Welcome to Connect. I'm sorry your discussion went without a response for so long. I did see a post by an active member, @nancy82415, in another discussion that mentions Arnold Chiari Malformation 1 and she may have some information or experience to share with you. Here is her post in the other discussion - https://connect.mayoclinic.org/comment/788399/.

I thought I would share a few organizations that might be helpful for learning more about the condition in case you haven't seen them.
-- American Syringomyelia and Chiari Alliance Project: https://asap.org/
-- Chiari Malformation Resources: https://neurosurgery.weillcornell.org/condition/chiari-malformation/chiari-malformation-resources
-- Conquer Chiari: https://conquerchiari.org/index.asp
-- Chiari malformation care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/chiari-malformation/care-at-mayo-clinic/mac-20354017

There are quite a few discussions and member posts on CRPS that might be helpful. Here's a search with links to the discussions and posts - https://connect.mayoclinic.org/search/.