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Tarlov Cyst on the spine: Any advice?
Spine Health | Last Active: Apr 21 4:48pm | Replies (219)Comment receiving replies
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.
Replies to "Hi there, I too have Tarlov Cysts. Mine are along my entire spine, but are currently..."
You can send your MRI to Rudolph Schrot in Sacramento CA and Wendy (his assistant) will get back to you pretty fast with some questions. Its not too far. He is with sutter health.
@bogobarb
Tarlov cyst's. I was first diagnosed in 2001. Tarlov cysts are similar to fibromyalgia in that doctors are told in medical school they don't cause problems and it's slow and coming that they recognize them. There is a great site. Tarlov cyst foundation that has a lot of great information. Including I think it's four doctors across the country that can actually treat them. Yes they cause problems. Yes they cause pain
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Two doctors in United States are specialists in the area of Tarlov Cyst Disease. Dr. Frank Fiegenbaum, Dallas Texas. And another in Sacramento, California. Sorry, I don't have his name right this minute. Google, 'The Tarlov Cyst foundation.' Plenty of info on Google. I have had symptomatic Tarlov cysts for 17 years. I'm currently working on getting a telephone consult with Dr. Fiegenbaum. Hope this is helpful. I'd like to talk more.