I’m sorry for your pain Keep searching for answers. I have a small Tarlov cyst that causes minor problems compared to yours. I have done considerable research and can share a number of resources with you. I will send you those via private message. Johns Hopkins has a Tarlov Cyst Program and clinical trials. For starters, Look up The Tarlov Cyst Foundation and join the National Tarlov Cyst Facebook page where you can learn from other’s experiences.