ganglioneuroblastoma at 2 + spinal decompression + instrumentation

wdbrenna

Just wondering if there is anyone out there with similar medical history to my daughter's who would like to share their experiences, please?

1. Diagnosed at 21 months with ganglioneuroblastoma (massive tumour in her chest, left lung mostly compressed, stretching along most of her spine and also inside her spinal canal)given chemo and underwent a surgery to remove most of the tumour.
2. At six, due to rapid neurological deterioration (decreasing mobility) underwent spinal decompression and had a set of fixed rods inserted at the same time (from L1 to T2). Success!
3. At 10 started loosing her mobility again, another spinal decompression (apparently it was mostly scar tissue from previous op that was pressing on her spinal cord). Rods were left as they were because there was already too much strain on the cord). Successful again!
4. Two years on - pains and aches as expected... Her spine's curvature is increasing and I'm deperatlely worried about a strong possibility of a crankshaft phenomenon getting out of control any time now and possible further spinal surgeries.