Tarlov Cyst on the spine: Any advice?

The big problem with the medical community and Tarlov cysts is that close to 80% of folks have them, and they are asymptomatic for them. The few percent of us whose Tarlov cysts are symptomatic are disregarded because very few neuroradiologists have the skill set and expertise to notate on your MRI report the number of cysts, dimensions of each cyst, fluid volume of each cyst, as well as the exact location of each cyst. I just had my pain specialist order a MRI requesting all of that information. I paid $550.00 for it. The report came back with not one of those requests notated. The neuroradiologist argued that the cysts are benign, incidental findings and it was ludicrous to ask in the first place. My doctor called the radiologist and found out he just didn't know how. I was refunded all my money. Now, I'm looking for a neuroradiologist closer to Florida to send the MRI disc to. Perhaps John Hopkins in Jacksonville. I have done hours of research, purchased medical journal articles, etc. in order to become more educated to advocate for myself. Please do not give up. If you do, you've lost. Keep hope alive!
I'll be happy to share what I've learned. Just feel free to ask.

Has anyone been diagnosed with a Tarlov cyst on their lower spine? I would appreciate any information concerning this. Thanks

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 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..)