Hi Lillibet and welcome to NeuroTalk!

I've posted the link to the Rare Diseases Forum where there is a sub-forum for Tarlov Cyst.
I have MS so I don't visit that forum often but I'm sure you'll find some friendly and supportive people there. Please feel free to join in on any forum you feel comfortable on, though. There are a bunch of wonderful people here!
http://neurotalk.psychcentral.com/forum87.html