@jenapower

I have also been diagnosed with Tarlov cysts. I have 5 or 6 of them that cover my whole tailbone/sacral area. The doctor you are speaking of is Dr. Frank Feigenbaum https://www.frankfeigenbaum.com/ . I made the trip to see him and it was so worth it. Just the validation that I'm not some kind of hypochondriac or crazy person made me have a meltodwn. I'm sure probably have meltdowns too caused by trying to endure the symptoms. Currently my insurance is denying my surgery and I'm in the grievance process.

If you don't get the surgery then the symptoms just continue to get worse. I have nerve pain from my lower back all the way down to my toes and have developed peripheral neuropathy on my right side. I have lost control of my bowels at this point and am having issues with my bladder. I'm with you on the headaches cuz I have the sames ones!! I am basically bedridden because of all this. The headache is always there but the intensity just goes up &n down. As soon as I sit up all the pain and pressure woosh up from where the head meets the spine and is mostly across the whole back of my head. I get blurry vision, pressure & shooting pain in my right ear, and extreme nausea. It makes it really hard to evto res. I can't concentrate on anything (makes trying to watch a TV show impossible), have a hard time finishing a sentence because I can't think of simple words, keep asking the same questions over & over, and can't remember anything.

The best website to refer to is https://www.tarlovcystfoundation.org/ . Go into the Survey/Research and fill out the survey. Also go into the Library. There is so much information there that will explain so much more for you than just reading the home page.

Best of luck to you and know that you're not alone. I am willing to try answering any questions you may have. If I take a while to respond it's because I can't keep my head up long enough and not because I'm ignoring you. Take care!