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Tarlov Cyst on the spine: Any advice?

Posted by vadaanglin @vadaanglin, Jan 31, 2019

I have a large tarlov cyst 2.5cm and 3.5cm on the spine in the lumbar region. Some what rare and doctors seem to know little about and say they are nonproblematic. I'm having chronic pain. Any advise will be appreciated.

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marchand | @marchand | Sep 29 4:41pm
In reply to @kgrainger "I have Tarlov Cysts at all levels of the spine. I have chronic pain in the..." + (show)
Profile picture for kgrainger @kgrainger

I have Tarlov Cysts at all levels of the spine. I have chronic pain in the upper right stomach and had my gallbladder removed with the pain still there. I have pain also in the thoracic area of the spine. Left foot numbness, burning mouth and my body aches all over. Can someone point me in the right direction. This all started after a reclast infusion for osteoporosis that landed me in the ER with severe pain in the thoracic area and upper right abdomen pain. Then got worse after Covid vaccine and 3 days later needed up in ER with Chicken Pox.

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@kgrainger just checking to see what you have done about your Tarlov Cysts. I also have them at every level and bilaterally.

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marchand | @marchand | Sep 29 4:45pm
In reply to @bogobarb "Hi there, I too have Tarlov Cysts. Mine are along my entire spine, but are currently..." + (show)
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Hi there, I too have Tarlov Cysts. Mine are along my entire spine, but are currently worst in the lumbar/sacral region, which is apparently common. Perineural cysts were identified on my MRI's for years, but none of my doctors were familiar with this disorder and ignored my questions . Now, in addition to chronic migraines, etc., I'm having difficulty walking or standing for more than a few minutes. I am still trying to find help for this, and am also trying to get genetic testing. Many people with TCs also have Ehlers-Danlos Disease, and since I meet many of the criteria, I am hoping that having a diagnosis might help me to get help.
I am in Orange County, CA and am desperate for any leads. Thank you for including me in this group and conversation.

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@bogobarb just curious what you have done about your Tarlov Cysts. I also have them at every level and bilaterally. Has anything helped?

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