Hello Anndav,

Sounds like you have been to the right physicians so far. I would recommend doing research online on Tarlov Cysts if you haven't done so yet. Therr is a website that is strictly for Tarlov Cysts disease, which is Tarlov Cyst Foundation. There is a lot of imformation there and I believe there is a list of physicians listed who specialize in Tarliv Cysts disease.
I reside in Georgia and the couple of neurologists and neurosurgeons I have consulted with are knowledgeable about Tarlov Cysts and the neurosurgeon has experience with the disease. Orthopedic is not a physician I would see for Tarlov Cysts because the cysts has to do with the nerves.

I had to have back fusion surgery done over a decade ago by a orthopedic surgeon in the same area as the Tarlov Cysts. He saw the cysts and wrote it in his operative report but didn't touch the cysts for the reasons I have stated.
I do have SI joint issues and have had epidural injections done to help with it. I also have had issues with the burning pain in the butt to where it feels like my butt is on fire. I could hardly ever sit because of the pain being so bad. 1 of my surgeons had said it was because of the piriformis muscle pinching the sciatic nerve.
The piriformis can be set up 1 of 3 ways in your body. Everyone is different.
1) The piriformis muscle can run underneath the sciatic nerve.
2) The piriformis muscle can run right over the sciatic nerve.
3) The purifornis muscle can be solit like scissors and run both underneath and over the sciatic nerve.

In my case the pirifornis muscle was split like scissors abd was pinching the sciatic nerve. I had surgery called, Piriformis Release where my surgeon went in and cut 1 side of the piriformis muscle to release my sciatic nerve. After I had the surgery done, the burning pain in my butt went away right away and I haven't had it since then. There is a good possibility that the piriformis muscle could be pinching your sciatic nerve too. It would also cause pain in your hip too. If you are anything like me, both the sciatic nerve with the piriformia muscle, SI joint, and the Tarlov Cysts could all be contributing as a whole CV to your pain and the weakness you have been experiencing. I do know it all contributed to my pain and numbness too. After I had the surgeries and epidural injections done, the pain got much better. Like anything else, if I over do it I get a bad flare up from it.
Be careful with physical therapybif you are concerned about the Tarlov Cysts causing your pain. You must find a physical rherapist who is knowledgeable about Tarlov Cysts to understand what you should and shouldn't do.

Best wishes,

Diamond Tiger<3