Hi peacenlove... I had an MRI done end of September 2020 after 8 months of tailbone pain (resulting from a fall in Nov 2019 which resulted in a broken tibia, the tailbone stuff didn’t manifest itself till a few months later). All PT people would say was that it was inflammation. Anyway, the MRI revealed 3 Tarlov cysts in S2 area. Now I am in constant pain and the life I knew is gone. I live in PA (near Harrisburg), and saw you mentioned Penn Medicine ... I did make a trip to Johns-Hopkins spine neurosurgery center about a month ago. There was only one surgeon who would even talk to me about it [and they don’t even list Tarlov cysts in their services]. And, because it was a fall (trauma) that started it all, he had me get a CT scan of sacrum and coccyx to rule out any fracture. There was none. Still, he wants me to try getting a steroid injection in the coccyx area first, and see if that helps. If it does help, great. If it doesn’t, then J-H can go to step 2 (the cyst drain/fluid injection) ... petrified of that! An interventional radiologist does that procedure. I will turn 66 in a few months, and the retirement dream my husband and I had seems to be fading .. the places we wanted to visit, the things we wanted to do. It’s like getting through the day is all I can do now.
Can you share with me the name of the surgeon you found that is actually in PA (and if their is any level of experience that is made known)?
I hope your video conference with Metropolitan Surgery goes well ... what a boat we are in huh? So incredibly sad that science does not research methods of better surgery for these damn things!