Dr. Feigenbaum in Dallas, TX specializes in Tarlov cysts (perineral cysts). He is at Pine Creek Medical Center and he owns the Tarlov Cyst Institute. He has done over 1600 of the surgeries with good success. I was finally diagnosed after many years. Unfortunately, I can barely even walk with a cane, can't sit on my right butt cheek, have peripheral nerve damage along with hyperalgesia & allodynia down the whole right butt cheek & leg and it's spreading into the left side, lost control of bladder & bowel, etc. My husband took me down to Dallas to see Dr. Feigenbaum. Currently my insurance is denying the surgery but we are going to fight for approval. Doctors & apparently insurance companies just refuse to acknowledge that these things cause issues. I just don't understand it.

@bogobarb I absolutely understand. I'm in the same boat as you are only I wasn't diagnosed with anything. For 15 years I was just called a "chronic pain" patient and every time they did any kind of imaging I was told that they couldn't see any reason for my pain. I had a meltdown every time because I hurt so bad and just couldn't believe that they couldn't see anything. Come to find out in 2018 that right from the beginning, after my injury, I have 5 or 6 Tarlov or perineural cysts in my sacral area causing cauda equina syndrome. They are also causing me the low pressure headaches as well. They also found a tethered cord, normally found at birth, but can also happen with trauma. They told me the tethered cord might relieve the pain in my back. I haven't been able to stand up straight since my injury. I understand what you said about validation. I started crying when I finally heard a diagnosis. It feels so good to have someone go over your symptoms and validate it. My husband had been doubting me and so were other people we know. I don't care about the other people but to have my husband finally understand that I'm not crazy and really have been gradually going downhill for a long time felt sooooo good!!

Not sure where you're located, I live in Wisconsin, but I finally went to an integrative pain specialist because I was tired of pain management. Low and behold my doctor had one of these cysts, had the surgery, and actually helped with my pain! She talked to my PCP and pain management doctors and now they wall work together on my care. She is the one that pushed to get things done and is talking to other doctors that are saying the cysts don't cause issues. Also, she prescribed oxytocin troches and ketamine troches. They dissolve under your tongue and work together for pain. They work awesome!!! Best pain relief I've had in many years. She also referred me to one of the doctors that specialize in treating the cysts. I went down to TX to see him and was waiting for a surgery date until last week when I was told that my insurance denied it. Not sure what I'm going to do now. They said there are still a couple things they can do to fight the insurance but I don't want to get my hopes up. Things have been spiraling downhill really fast over the last year and I can't even imagine just sitting around and getting worse. I'm really scared.