Perineural or Tarlov cysts
Hi, my name is Jennifer. I have commented on here before but I've never started a post. I have been told that I have fibromyalgia for a long time, I also have had a number of accidents with many broken bones and surgeries to put things back together. All of this has resulted in chronic pain, most of it is down my head/back/pelvis/spine and legs. In an effort to try to see more my doctor did a lumbar and pelvic MRI last week. Turns out I have a cyst on my spine called a perineural or Tarlov cyst. It's basically assistant starts at the nerve root and herniates out filling with spinal fluid. I guess there's like a leak from your spine to this cyst but the system itself is made up of nerves. It's the best of my understanding at this point. Mine is at the S2 location, and can cause pain from your back down your bottom and down your legs and includes some pretty severe headaches because it's upsetting the pressure of the spinal fluid around the brain. Again this is the best of my understanding of what I've been told. It certainly explains a lot of my symptoms that have been contributed to fibromyalgia and broken bones. Again they're not really sure what causes them but they think trauma in that area could be a contributor. I just wondered if anyone else had heard of this or experienced it. It is considered rare, i've come to find out there are only two doctors in the United States to do surgery on it. One of them that's all he does and he actually goes to other countries to help people that don't have access to a doctor that is experienced in this surgery. It's a long recovery and pretty scary surgery because they're messing with your new or nerve root I don't want to think about what the bad consequences could be although I know I have to. I think I've gotten to a point where I'm pretty much flat on my back every day and it's no life, so I'm actually happy to have an answer. If anybody else knows anything about this I would love to hear it or has any experience with the surgery.
Thank you, Jennifer
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I too have the exact same issue as britt66. Never had back issues until I was assaulted. Then I pleaded to my long time Dr and friend. X-ray and MRI showed 2 large tarlov cysts. But this no it's not those it's my back. For a while now I'be been walking slumped over in excruciating pain. No help at all from anyone. I've had a total of 8 injections that failed. But of course we don't know our own body.
@anita1940 hi I just saw this and want to offer support! How are you doing now? Anything I can do to help?
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2 ReactionsI am eight weeks post Tarlov cyst, closure surgery and hoping that someone has already been through this. We’re going through this right now so we can share our current symptoms.