I just returned from 9 days in Rochester, Minnesota at the Mayo Clinic. I had my sacrum re-built and 7 LARGE (size of potatoe) operated on in Nov 2011 by Dr F. Since then the cysts have spread to my lumbar and thoracic spine and my health has deteriorated rapidly.
The dr did not say what i WANTED to hear but did say what i NEEDED to hear...basically said that at this time they have no surgical treatment to offer me. They recommended the nerve stimulator implant. He thinks that a lot of pain is coming from scar tissue and nerve injury and operating on the area would only cause more scar tissue to form. He drained 20cc of spinal fluid out of my spine to see if that would relieve some of the pressure ... I was able to EMPTY my bladder for the 1st time since I got sick. He was/is considering doing a shunt but it is VERY experimental and would be a last case thing to consider. He said "I am chasing a magic bullet that does not exist" He does not believe that any of my health issues are connected or can be linked together to one disease. I also DO have a rare form of spinal bifida what I was born with but he does not think that was the cause of the Tarlov Cyst Disease. He said I really need to go home to my children and come to term with the fact that there is no cure for the disease and live the best life I can
He will look at all of my future MRIs and CT Scans to see if at any point he thinks he can help me. Even gave me his personal email add to contact him even when I'm just having a bad day. He also recommended that I do traction, massage therapy, acupuncture...whatever reduces the pain.
Being that I am only 38 yrs old and the mother of 4 children this was a very hard pill to swallow. My records were reviewed by the board and also the Presindent of the Neurosurgery Dept so i COMPLETELY trust there is no "magic bullet" to fix me which takes alot of stress off of me to continuously consume my life with getting answers. I am trying very hard to accept this bc I have such a strong fear of the unknown. I like my life planned out..and not knowing if I will end up in a wheelchair does not allow me to plan out my future. There were so many things that I wanted to do w my children like white water rafting that I now know I can't scratch off my bucket list but I will have to put my faith in God although I am struggling to have a relationship w him (God) right now bc of not only my health but my pending divorce bc my husband believes that I am using my disease as an excuse to be lazy and not take care of my young twins. But I know that I can not get through all this without believing that everything happens for a reason.