Tarlov Cyst on the spine: Any advice?

I have been diagnosed with numerous Tarlov Cysts in my sacrum and I also have Adhesive Arachnoiditis. I believe both were caused by my dura being cut during surgery. I had a spinal fluid leak. There is surgery for Tarlov Cysts, but I am too old at seventy eight.

i've just been DX with a Tarlov cyst down by the Sacrum or is that down by the tailbone? i was told by a couple surgeons that it would be better to leave it alone. not because of my age of 66. but, it'd be more trouble to fix it than to leave it alone for now. so i guess i will leave it alone temporarily until it causes trouble. 🤷‍♂️

Is anyone here from Canada?

I'm having lower back pain for 5 weeks (I know, it isn't long compared to many others on this thread, but I wanna fix it before it got worse and chronic) which progressed into my right leg and toe with tingling and numbness since the 3rd week. It's disabling me from usual daily life and work and pretty much anything even as simple as getting dressed. After MRI on my lower spine, radiologists found no herniated disc or other disc issues, but found at least one sacral Tarlov cyst, pronounced to the right, associated with bone remodelling.

My symptoms are getting worse since onset, as now I started experiencing mild bladder issues. My current treatment is only NSAID since originally suspected to be disc problems which were ruled out in MRI.
I'm residing in Toronto from Hong Kong, and have no US visa. I read up in the Foundation website and found there's a doctor in Canada, Dr. Kieran Murphy MD, for such issues. But I have no idea how to navigate through the Ontario public healthcare system to get referred specifically to Dr. Murphy.

But looks like Dr Murphy is now on the research side only instead of operative. If he no longer perform operations I don't know how I can find any other neurosurgeons who are experienced in fixing Tarlov cysts..

(I did find some good neurosurgeons from google but not sure do they do Tarlov cysts..and the referral process to find a relevant neurosurgeon even for just consultation is long and tiring..)

I have them in every level of the spine. All the doctors say the same thing. Should not be the cause of my pain.

Hi, I was diagnosed with a Tarlov cyst at S2 one year ago, and again last month. I received an epidural steroid last year, but no other treatment. Now, symptoms are becoming increasingly worse, including, bowel and bladder issues, neuropathy, migraines. I am studying everything I can, educating docs as I go (so far: GP, GastroEnterologist and Orthopedic Spine surgeon). I am currently searching for a neurosurgeon who has treated these cysts. The Tarlov Cyst Fdn lists 3 docs, in Dallas, Sacramento and Silver Spring, MD. I am in the process of setting up a video call with a surgeon at Metropolitan Neurosurgery in MD (altho the doctor listed on the Foundation's website does NOT take Medicare, so I can't see him). I stumbled on Penn Medicine in PA that lists Tarlov Cyst as one of the conditions they treat, and that seems like a small victory! Are there any other places to look online for a "complete list" of experienced neurosurgeons? I really appreciate a community of folks with whom to share experiences and information. Thank you!

Hi peacenlove... I had an MRI done end of September 2020 after 8 months of tailbone pain (resulting from a fall in Nov 2019 which resulted in a broken tibia, the tailbone stuff didn’t manifest itself till a few months later). All PT people would say was that it was inflammation. Anyway, the MRI revealed 3 Tarlov cysts in S2 area. Now I am in constant pain and the life I knew is gone. I live in PA (near Harrisburg), and saw you mentioned Penn Medicine ... I did make a trip to Johns-Hopkins spine neurosurgery center about a month ago. There was only one surgeon who would even talk to me about it [and they don’t even list Tarlov cysts in their services]. And, because it was a fall (trauma) that started it all, he had me get a CT scan of sacrum and coccyx to rule out any fracture. There was none. Still, he wants me to try getting a steroid injection in the coccyx area first, and see if that helps. If it does help, great. If it doesn’t, then J-H can go to step 2 (the cyst drain/fluid injection) ... petrified of that! An interventional radiologist does that procedure. I will turn 66 in a few months, and the retirement dream my husband and I had seems to be fading .. the places we wanted to visit, the things we wanted to do. It’s like getting through the day is all I can do now.
Can you share with me the name of the surgeon you found that is actually in PA (and if their is any level of experience that is made known)?
I hope your video conference with Metropolitan Surgery goes well ... what a boat we are in huh? So incredibly sad that science does not research methods of better surgery for these damn things!