So sorry to hear of your agony. You have been an amazing parent and inspiration to many in your grueling journey! Some quick thoughts (as an admin & more):
- have you posted before under a different screen name? Pls let me know here or by PM. We can fix that if that is the case.
- if you search within this community, you will find other members with Chiari spine issues. Have you reached out to these members? Read their posts?
- have you had any luck contacting other people and orgs that focus on Chiari malformations, e.g. this
helpful patient? Christine has published a list of docs who specialize in Chiari, have you already reviewed
this list?
None of us can advise you on your next steps, but hopefully give you some other ideas or information to consider. For example, do you suspect that the source of your pain is inflammatory (respond to different classes of anti-inflammatories) or mechanical? Both?