Tarlov Cyst on the spine: Any advice?

Hello. Yes my TC are bilateral T6-T12. The T9-T10 are the ones giving me the pain, weakness.
I am having a Diagnostic Nerve Block next week to confirm location of pain.
Dr S from Sacramento did say I am a candidate for surgery but waiting for results. I m not having any symptoms for leaks.
I was in a bike accident in 2018 that I believe flared these up possibly.
Yes I think Thoracic area is rare. Good luck. Keep me posted.

I have several of them also. The worst is sitting on top of spine where my skull meets. Yes they are rare however common with the rare disease Adhesive arachnoidites. You should be checked for that. It's hard to be diagnosed though because radiologist aren't that familiar with it. The radiologist who did my MRI noticed right away my thecal sac had indentation and was full of nerves that were rooted. He looked it up and that is how they figured out what I had going on. I had previously had my 4th back procedure ( radio frequency nerve denervation) where they go in and burn the nerves for pain relief. The last denervation I had. I knew something terrible had happened during the procedure. I felt a sharp pain and my right leg went intoa convolution . It was so scary when I asked what was going on my surge said . It's okay! It's just letting me know im in the wrong area!! Well he had "accidentally "punctured my dura sack causing a SCFL. He decided to not tell me. I had problems from the moment it happened. Instant foot drop, horrid nerve pain shooting up my legs it felt like I was being electrocuted . My back would burn off and on like someone had just thrown a bucket of acid on me. I had the worst migraine ever. I ended up going to the ER that night. They didn't bother to do an MRI to see if I had a spinal cord leak. They should have as I just had a back procedure next to my spine Earlier that day. I guess what hurts the most is they could if given me a blood patch and it would of reversed the non curable disease I had no idea at the time I was just given. It took 9 months for me to be diagnosed with Adhesive and. My Dr. Thought I had really bad Neuropathy and started treating me for that. I lasted 9 months, then I told him one day, I can't live like this anymore. I'm done! He said let's go do an MRI and see if anything is going on. So prior to all my back procedures I HAD to get an MRI done my insurance wouldn't cover my procedures until I had one done prior. I never had Adhesive Arachnoidites in any of the past MRIs and definitely not present the one I had done the day before I had my 4th nerve denervation. The MRI showed something was definitely wrong the radiologist just had to figure out exactly what it was. And it wasn't super easy to figure out as Adhesive arachnoidites is a rare disease. But I'm grateful he did. It was just to late to reverse it. You have to get a Blood patch within 24 hours of injury. There are only a few ways people can get this disease. A misplaced epidural during child birth or any surgery or procedure done on the back,if you ever had spinal meningitis, and if you had an MRI done before 1989 back then they used an oil die that has since been linked to Adhesive arachnoidites. Since having AA as we call it. I have developed several Tarlov cysts the one sitting at the top of my spine where my skull meets is the worst. My nuero spinal surgeon said the best way to explain it to me was its like having an aneurysm but instead of the sack being full of blood it's full of spinal cord fluid. I have horribly migraines and I take imatrax ( migraine meds) daily. When there really bad I have to go to the ER. They have checked on that specific Tarlov cyst during a migraine and everytime its leaking. My nurse surgeon said I just have to live with it. I'm in a Adhesive arachnoidites group and pretty much everyone else with this disease has Tarlov cysts too so we firmly believe this rare disease comes with Tarlov cysts also. There is nothing they do for them. They just leave them alone.. my disease is listed as one of the most painful diseases there is it's right there next to stage 4 bone cancer so I am on Morphine 24-7 also roxycodone rapid release and then 3 different nerve blockers. I'm still in alot of pain but mostly lumbar ( back pain) and thoratic. So I couldn't tell you really if they cause additional pain. I also have a couple on my spine. But no my neuro spinal surgeon said they leave them alone. And that's pretty much what everyone in my AA groups say also. Mine have definitely been confirmed. I will look back in my mychart and send you my diagnosis on them and you can see what it says.

Thanks, @cpidgeon59 ! Because I have been told I have everything from migraines to psychological issues, it has become hard to believe doctors' diagnoses. Although I wish no one has had to experience this, it is reassuring to know that the diagnosis is possible. I will keep you posted! Take care and I wish you well!

That's horrible, @rocknrollgirljenn ! Admitting a mistake is difficult, but how can you not do so knowing that it could leave someone in chronic pain!?! I looked up AA, and it looks like I should check into it. I have nearly all of the symptoms and predisposing conditions, one of the hormone deficiencies, and prior to being treated for a rheumatological condition, all of the inflammatory markers.
I just need to work up the courage to ask. Given my history with doctors, I am scared of being dismissed, misdiagnosed, or getting another diagnosis added to the list. I only go see a doctor after a family member lectures me for a year and eventually, gives up, makes me an appointment, and stuffs me in their car. Thanks for the help, @rocknrollgirljenn !

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!!

I was turned down by Mayo to see any Doctors after they reviewed my MRIs. I am now working with Dr Schrot at Sutter Medical in Sacramento , CA and things are moving along smoothly. Just had a Diagnostic Nerve Block T9-T10 to pin point my pain, next consult is on the 25th with Dr S. Good luck to you, 🌺

@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?

@babykrueger123 Here is some literature about a case report on surgery for a Tarlov Cyst and Mayo Neurosurgeon, Alfredo Quinones-Hinojosa is one of the authors. This is the full version of the article. (It may be what was referenced in the other post's link to the abstract.)
https://www.researchgate.net/publication/50520477_Diagnosis_and_management_of_sacral_Tarlov_cysts

Hi Jennifer, thank you so much for getting back to me with what looks like some great information!! I will now read the links that you sent me and see what's going on!! To be honest with , I would rather come to, Mayo because that would be just a car ride for us coming from Milwaukee, WI , Instead having to fly to Dallas to see this other Neurosurgeon that I was considering!! I have tons of questions, but I want to read everything you sent me!!

I can't thank you enough, Jennifer! I will get back to you as soon as I can!!!

The pain starts just 2 minutes into walk paralyzing me hip down both legs with relief after sitting down a few minutes, bowel movement and numerous urged to pee. What is next because 98% of doctors do not know anything about it and numerologists are there only to take your money by scheduling appointments. HELP