Hello. My 5 year old son was diagnosed October 08 with a large spinal arachnoid cyst extending from T4 to T12 with flattening/compression of his spinal cord. The cyst was an incidental finding on a routine cancer MRI. He was diagnosed with neuroblastoma at age 3 and presently has clear cancer scans. His symptoms were fatigue, back pain, leg pain, leg numbness, and bladder incontinence (which we had assumed were side effects of his major abdominal tumor resection done Feb 08). Jan 09 he had a T5 laminectomy with cyst fenestration. The cyst and spinal cord compression remained. Next, April 09 a vavleless peritoneal thoracic shunt was placed. July 09 MRI showed no improvement. His symptoms were slightly better after surgery, but not much. He had a month of daily low pressure spinal headaches after the spinal shunt was placed, then intermittent headaches for the next 2 months (indicating the shunt was overdraining). When the headaches were worst, the potty accidents were nearly gone. When no headaches, more potty accidents. Our neurosurgeon has requested another MRI Tuesday and depending on results plans to do a shunt revision in the next week or so. This will be his 11th surgery. The neurosurgeon is reluctant to do a full cyst resection because he doesn't want to take out any more bone and increase the risk of spinal deformity due to my son's young age.

Anyone out there with experience with spinal arachnoid cysts? Advice on shunt revisions? Can valves be used with spinal shunts? Laminectomy vs. laminoplasty? Any advice would be greatly appreciated.

Thanks.