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Hi Jennifer, I to just found out from a MRI back in November that I have a perineural/Tarlov cyst on my spine L5-S1 area. They say they are very rare & most times asymptomatic but I have A LOT of pain in my lower back where it is located. I haven't felt pain in my bottom or down my leg yet & I pray I don't. I ALWAYS get headaches that at times feel like migraines. I have been unable to find a Dr that treats these rare cyst except for one in Dallas, Tx and he does not take my insurance so that's upsetting. If it goes untreated from what I read it will cause permanent nerve damage that's not repairable. So I know exactly what u are dealing with. I don't feel so alone now knowing I'm not the only one with this rare cyst.
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Hello, I also have Tarlov or Perineural cysts in my spine, a recent MRI done at Mayo Clinic mentioned one at S2 which I knew about but also more along the cervical and T11 areas. They discount them as a cause of pain, and since I have moderate stenosis and severe facet arthropathy I don’t know, but I believe they do cause pain. There is a support group on Facebook which has a huge number of members from all over the world, if you need help with support and ways to lower the pain. I will not have the surgery, I don’t think it would help me at my age (70) as I’ve been suffering for years. There are supplements and natural treatments that are supposed to help. There’s only a few surgeons in the world that will operate, they are mentioned there! I wish you all the best in your search for relief!