I was curious if anyone has or had a meningeal diverticulum or Tarlov Cyst along with Chiari. My son had a giant meningeal diverticulum removed from his sacral spine last year. He is now experiencing more Chiari symptoms.
I have a stable tarlov cyst in my sacrum. I also have a large benign tumor at the bottom of my thecal canal…I have EDS. Did his symptoms kick up right after the surgery?
Jenn
No, he had symptoms before surgery but not bad. His daily headaches began 4 months after surgery and seem to be getting worse. What he had was not a Tarlov cyst but a meningeal diverticulum. It went from L5 to the bottom of his sacrum. It was compressing all his sacral nerve roots and had eroded some of his bone. Since it would continue to grow we decided on surgery. The chiari was found when he had the full spine MRI.
He was tested for Marfans and went to a cardiologist. He does not meet the EDS criteria.
Abby said:
I have a question for you DAP, has your son been diagnosed with Ehlers Danlos Syndrome, Marfans? This is from Wikipedia.
Tarlov cysts, also known as perineurial cysts,[1] are cerebrospinal-fluid-filled (CSF) sacs located in the spinal canal of the S1-to-S4 region of the spinal cord (much less often in the cervical, thoracic or lumbar spine), and can be distinguished from other meningeal cysts by their nerve-fiber-filled walls. Tarlov cysts are defined as cysts formed within the nerve-root sheath at the dorsal root ganglion.[2] The etiology of these cysts is not well understood; some current theories explaining this phenomenon have not yet been tested or challenged. They are named for neurologist Isadore M. Tarlov, who described them in 1938.[3]
Tarlov cysts are relatively common when compared to other neurological cysts, but they are usually asymptomatic. These cysts are often detected incidentally during MRI or CT scans for other medical conditions. Cysts with diameters of over 1.5 cm (0.6 in) are more likely to be symptomatic; surgical treatment should be considered if all other symptom-relieving options have been exhausted. No current treatment so far has proven to be effective due to the unclear pathogenesis and pathophysiology of Tarlov cysts. Current treatment options include CSF aspiration, complete or partial removal, fibrin-glue therapy, amongst other surgical treatment approaches.
Tarlov perineurial cysts have occasionally been observed in patients with Marfan syndrome, Ehlers-Danlos syndrome, and Loeys-Dietz syndrome.[4]