Hello Everyone,
I've been following this community for several years now and this is my first time posting.
My 19 year old daughter started experiencing "unexplained" hip weakness almost 5 years ago. At that time they discovered a Chiari 1.
I should add, she has SO and Dystonia but is a High Performance Paralympic Swimmer so her body is/was very strong.
Her story is very similar to what I am reading here. She was told it was an insignificant finding, that she had conversion disorder, that she should give up swimming, that she just needed to try harder and stop malingering.
We live in Toronto and I have taken her to several doctors in the US including the Mayo clinic. No one will consider the Chiari.
She can no longer lift her legs, kick while swimming, has buzzing and burning pain in her hand and feet and uses a walker and a wheel chair to get around.
I don't have a question, I guess i just needed to get all that off my chest and feel part of a community that understands what she is going through.
Thank you for reading/listening