The dr.'s found 3 cysts growing on my spinal nerve roots by my sacrum, the dr.'s said not to worry there is nothing they can do for those, so I thought nothing of them; because I was having really sharp siatic pain going down my legs; well 4 neurosurgeons later dr Kabins from Las Vegas, NV said my tailbone was severly shattered I had surgery in september, 08' took 5.5 hours thinking I was going to be fine, my pain and walking abilities became worse, so I decided to look back on my MRI from 07' it read tarlov cysts, I googled it and the symptoms came up that I was having, so I had another MRI done recieved my report 2 days later my cysts have grown from 15mm to 20mm I'm learning they erode your nerves and bone away and there is only 5 neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI due to obvious reasons. I feel like a prisoner in my own body, as I was a very outgoing person, now it's sit and wait.
I recieved the letter from Dr. Feigebaum from Dallas, TX. he wants to do surgery ASAP I had to tell him I'm waiting to get my SSI when I spoke to him on the phone, I have to have two surgeries he said my pelvic is filled with cysts, and the tarlov cysts have been eroding my sacrum bone away. the surgery will take 4 fours, 4 days in hospital, then he wants me to stay in Dallas for 8 more days to make sure I'm not paralyzed, 18 months to heal. then I go for my other surgery. I'm just hanging in there have a great day everyone you can also find everything you need or want to know on tarlovcystfoundation.com