I Have a WHAT-A-Hooey?

Even though my MRI mentioned “incidental” Tarlov cysts, I had no idea what those meant. Honestly, I had skipped over that tiny phrase and didn’t even notice because I was looking for answers in my spine as to why I had this nerve pain. Later, I would learn that anytime a radiologist says “incidental,” it means it has no clinical significance. So, of course my PCP wouldn’t think anything of it either. She doesn’t even see my MRI. The MRI report mentioned several bulging discs, herniated disc, and stenosis. I was ecstatic! “Great! I can have injections and this will all be over. I can get my life back!” 

My PCP referred me to the UT pain clinic and ordered Epidural Steroid Injections. However, they told me that I was not a candidate for the shots because my symptoms did not match my conditions. In fact, they said the problems that showed up in my back were typical of people my age. Tears immediately filled my eyes when the doctor told me this. I was devastated. He told me I needed to go back to my PCP and explore medication options for nerve pain. He even mentioned two of the medications I was already on! Um, excuse me. . . Did you even read my file?!??! “You mean I have to keep suffering with this pain? I don’t know how much longer I can stand this!” I cried all the way home and called my Mom and husband to tell them the news. We were all in shock and disappointment.

At my next chiropractor appointment, he asked if he could see my MRI images and I gladly shared them. Immediately, he said, “You have a Tarlov Cyst in your sacral spine!” “What? What does that mean?” I thought that Christmas looking lightbulb at the end of my spinal canal was supposed to be there. No. My Chiropractor went on to tell me that he was aware that these Tarlov Cysts could cause neuropathic symptoms like I was experiencing.  I had an upcoming appointment with a top neurosurgeon at UT and was sure he could help me.  At first, I thought, “Well this is awesome! We’ve found the real problem.” But, little did I know how serious it was. I don’t even know why they call them “cysts” because they are actually nerve roots blown up with cerebral spinal fluid. The term in and of itself is misleading. The fact that my Chiropractor knew about this disease is extremely rare. I later asked him, “How did you even know about this disease?” “I don’t know. I just remember it from school. I’m full of useless information!” Of course he knew it was going to good use in my case. Amazing. 

Beautiful MRI images of my very photogenic cysts.