IceCreamSandwich

65d

Hi all. I have EDS and have a large number of Tarlov cysts on my spine. They cause a lot of pain but so far I’ve found no potential treatments. Anybody have these? (I also have cysts in most of my organs, including my brain, if that’s relevant.)
Thanks in advance for any help!

Ehlers-Danlos Syndrome (EDS)

Perineural cyst

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  • Maryn123

    59d

    Hi, I am familiar with the problem from a family member I take care of. He suffers a lot from these cysts. I'm not sure what you tried but I'll tell you what worked for us. Initially, we would drain these cysts, but they often came back and only temporarily helped the pain. After that we tried steroid injections which also did not provide a very effective solution until we combined them together with strong painkillers, that's how we managed to get good control over the pain. Have you tried these things?

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