Tarlov Cysts

[hevnw8s]

Hi Everyone. I have a dillema so I thought I would pose it to the forum. I have Chiari, syringomyelia and Tarlov Cysts. The cysts are kind of like Chiari..because of their complexity, doctors don't want to deal with them. The cysts are attached to the spine by nerve endings so a fairly complex surgery is needed to deal with them.

My Chiari doctor here hyms and haws about my chiari so I figured I would take care of my cysts instead. I have 2 large cysts on my sacrum which I believe is the cause of most of my weakness and pain. There is only one doctor who deals with Tarlov Cysts and he is out of Dallas. I sent him all of my scans and he recommends surgery. I scheduled surgery for November...meaning I have purchased the tickets, paid for the hotel and rent-a-car and got pre-approved by my insurance. I will be in the hospital for 4 days.

Now...I told my PC and Neurologist about the surgery. Both of them cringed and said I should really thing about it before I fly out there for the surgery. Now I'm worried and I was excited!

My PC also told me that I will need to find a Neursurgeon willing to follow-up with my spinal care. He said almost every doctor will decline to see a patient that had surgery by someone else. He said I will probably be on my own.

So...does anyone have any ideas on the surgery aspect? and does anyone know about having surgery in another state and needing follow-up care locally?

[hevnw8s]

Thank you both for your input. I guess I should talk to my current NS and ask if he would be willing to see me on follow-up.

[selmaS]

  Hi....I do know that where the spine is concerned most will not touch a spine unless it is a virgin spine ( one with out ne surgery) ...the only exception to this I have heard is a true Chiari specialist... they will help and do surgery to correct issues another Dr may have left....

If ur Chiari specialist does not work on the cysts, then ask if he has a NL that can follow up for u post op for the cysts.....That is who u need to talk with.

[AnnieDear]

Honestly, I have no idea what to tell you. Dd the PC or NL have any advice for you in terms of treatment there? If they don't have suggestions for a better plan, then I don't think they should interfere. Your PC does have a valid concern, though, with follow up care. Perhaps the Dr. In Dallas can make a recommendation? Or work together with a local dr?it might be a hassle finding a local dr, though. I think it all comes down to whether you feel that the cysts are at the point where this just has to be done. Consider the options, your quality of life, and possible outcomes (good & bad).

Best wishes,
Annie