Hi mommacat2, I mentioned Penn Medicine after reading this article at PubMed: "Microsurgical treatment of sacral perineural (Tarlov) cysts: case series and review of the literature" - https://pubmed.ncbi.nlm.nih.gov/26745352/. Interestingly, since my initial post in January, all the docs at Penn Medicine, Lancaster PA now list Tarlovs as a condition that they treat. So, they must have attended a lecture by the authors of the PubMed article, as I doubt that all have performed Tarlovs surgery since January. Anyway, a step in the right direction that they work with docs who have. I am planning to move to York PA this year to be near family, which is why the interest in Lancaster docs. For now, I have an appointment with a Neurosurgery practice in Colorado, closer to where I currently live. The more I read about surgical treatments, the less I am inclined to go that route, altho symptoms are worsening. Hopefully, I will know more in a few weeks. And yes, what a boat we are in! When your "condition" is listed at "National Organization for Rare Diseases dot Org" you know you are about to "educate" yourself, and the medical community, about your situation and its possible treatments. That's why it is valuable for us to be able to read and report here. Thanks, Mayo Clinic! Be well, protect your mental and emotional health along the journey! pnl