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Tarlov Cyst on the spine: Any advice?
Spine Health | Last Active: Oct 21 8:17am | Replies (173)Comment receiving replies
I have multiple Tarlov Cysts that have now invaded my sacrum! I am in severe pain and I get dizzy when I stand up! The Cysts are fairly large and are compressing on several nerves! I currently go to a pain clinic to manage my pain, but I'm tired of being on pain meds and I'm tired of not being able to do things, sit in a chair without pain and tingling in my feet!! I am absolutely desperate to find a neurosurgeon who can address and fix this at the Mayo Clinic!!!! Somebody, please tell me there is someone who can help me!! Did you know that tarlov cysts happen when you leak spinal fluid and it forms these cysts that crush your nerves! I watched a video of a Dr. Frankenbaum in Dallas, TX who has dedicated himself to these tarlov cysts but I'm hoping that the Mayo Clinic in Minnesota would have such a doctor!!! It would
be a car ride to the Mayo Clinic vs. a plane ride to Dallas! Taking a plane would be very difficult for me! Any help would be so appreciated!!
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@babykrueger123 I think you are in luck. I did a search and I came up with an abstract to literature about a surgical case for Tarlov Cysts at Mayo Clinic in Rochester. Then I recognized the names of 2 of the authors. One is Dr. Jeremy Fogelson who did my cervical spine surgery and the other is Dr. Ross Puffer who at that time was in the neurosurgery program at Mayo when I had my surgery and he was involved in my care.
Dr. Fogelson was the reason I came to Mayo for spine surgery and he was wonderful and I recovered well from my surgery. He teaches at Mayo. I highly recommend him and he is kind.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Here is the literature that he co-authored on Tarlov cysts, also known as perineural cysts.
https://mayoclinic.pure.elsevier.com/en/publications/tarlov-cyst-causing-sacral-insufficiency-fracture
There is also a surgeon at Mayo Jacksonville with this literature about Tarlov Cysts
https://mayoclinic.pure.elsevier.com/en/publications/diagnosis-and-management-of-sacral-tarlov-cysts-case-report-and-r
Alfredo Quinones-Hinojosa
https://www.mayoclinic.org/biographies/quinones-hinojosa-alfredo-m-d/bio-20238939
If you wanted to seek treatment at any of the Mayo campuses, this link will get you started.
http://mayocl.in/1mtmR63
I'm glad you reached out here. I did search on the Mayo website and didn't find information about Tarlov Cysts. It was in searching for literature from Mayo that I found the information. Thank you for that, and I will let our moderator know that this information should be added to the site.
May I answer any questions for you about my care at Mayo Clinic?