After a recent hip replacement (many years post MVA), my daughter (aged 39) has been diagnosed with symptomatic Tarlov cysts. on the S1 region of her spinal cord.
Her pain is pretty much unremitting apart from cortisone shots into her spine (she had a second one today, and is feeling great at the moment). Unfortunately it seems that there are few (if any) doctors here in Australia who are competent in effectively treating Tarlov cysts, especially given the rarity of the condition, and the neurosurgeon her GP referred her to has had less than complimentary reviews from former patients. So we’d like to avoid him if possible. 
So, questions if I may. Have any of you had experience with this disease, what treatments have you tried, any information will be gratefully taken onboard!
How incredibly good timing… I had Tarlov Cyst surgery on 3/16 and have been given back my life. My cysts were at L5 S1 and were removed at Penn Medicine in Philadelphia, PA, USA by Doctor Welch. I would be happy to answer any questions you may have, assuming I have any answers. 
Welcome back!! Did you have any treatments prior to your surgery that helped alleviate your symptoms? As I mentioned, whilst there are competent docs in the US, it seems we don’t have the same expertise with surgery here in Australia, so looking at exhausting every possible treatment option before going the surgical route.
I have been dealing with this for nearly 5 years. I’ve had the Cortisone shots. The first two were very helpful, but the additional ones after that really didn’t help me much. I took medicine, specifically, Nucynta, which took away most of the pain, but never all. I tried Physical Therapy, shots, and other meds, but the only things that kept me going was the Nucynta. And the strange part about that is it is an opioid that doesn’t get you ‘high’. I had a clear (for someone with Tarlov Cysts [TC]) head.