Hi Lillibet

Tarlov Cysts are not that rare, in fact about 4% of the population has them. I liken them to a balloon in the sidewall of a bike tire. When CSF pressure spikes up the balloon expands, pinching the nerves around it. Most drain out quicly after they fill, causing short term discomfort. For some of us the cysts stop draining and cause chronic problems. It sounds like you are in that category.

Last year a Foundation was organized to conduct research and educate docs. Sadly most don't understand TCs so most remain undiagnosed or dismissed as non-symptomatic. You can learn a lot about TCs from them. Google tarlovcystfoundation for them



Good luck with it.