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.

Jessinka

Ganglioneuroblastoma at 4 + spinal decompression&instrumentation
Hello wdbrenna,

My daughter was diagnosed with ganglioneuroblatoma stage 3 when she was 4 years old.
1. She had a surgery to remove part of her tumour which was and still is located in her chest, wrapped around her spine and inside her spinal canal. She was also given 6 doses of chemo which didn't shrink the tumour at all.
2. At the age of 5 she started wearing a back brace for her progressing scoliosis which developed after the surgery to remove part of her tumour when she was 4.
3. At the age of 9, my daughter needed an emergency surgery to remove her tumour inside her spinal canal as she started limping, tripping over and she had a terrible pain in her back, this was because of her tumour started growing and pressing onto her spinal cord.
- she had tumour resection (15cm long tumour)
- she had rigid spinal rods inserted along her spine to keep her spine stabilised
4. She is 10 years old now and doing really well!!

She will have few more surgeries to extend her rigid rods as she grows and her curver gets bigger (by cutting them and inserting sliding domino) and eventually a spinal fusion.

It's unbelievable how similar are daughter's stories are.
You now got me worried about the scar tissue which might form following her surgery in February. May I ask whether they put the back (lamina) of your daughter's vertebrates back following the tumour resection or whether they kept it pretty open? How easy or difficult was the second decompression?

Thanks and all the best.

wdbrenna

Jessinka said:

Ganglioneuroblastoma at 4 + spinal decompression&instrumentation
Hello wdbrenna,

My daughter was diagnosed with ganglioneuroblatoma stage 3 when she was 4 years old.
1. She had a surgery to remove part of her tumour which was and still is located in her chest, wrapped around her spine and inside her spinal canal. She was also given 6 doses of chemo which didn't shrink the tumour at all.
2. At the age of 5 she started wearing a back brace for her progressing scoliosis which developed after the surgery to remove part of her tumour when she was 4.
3. At the age of 9, my daughter needed an emergency surgery to remove her tumour inside her spinal canal as she started limping, tripping over and she had a terrible pain in her back, this was because of her tumour started growing and pressing onto her spinal cord.
- she had tumour resection (15cm long tumour)
- she had rigid spinal rods inserted along her spine to keep her spine stabilised
4. She is 10 years old now and doing really well!!

She will have few more surgeries to extend her rigid rods as she grows and her curver gets bigger (by cutting them and inserting sliding domino) and eventually a spinal fusion.

It's unbelievable how similar are daughter's stories are.
You now got me worried about the scar tissue which might form following her surgery in February. May I ask whether they put the back (lamina) of your daughter's vertebrates back following the tumour resection or whether they kept it pretty open? How easy or difficult was the second decompression?

Thanks and all the best.

Thanks!
Thank you, Jessinka! Just found your reply here - didn't think my first post went anywhere. All the best.

wdbrenna

Jessinka said:

Ganglioneuroblastoma at 4 + spinal decompression&instrumentation
Hello wdbrenna,

My daughter was diagnosed with ganglioneuroblatoma stage 3 when she was 4 years old.
1. She had a surgery to remove part of her tumour which was and still is located in her chest, wrapped around her spine and inside her spinal canal. She was also given 6 doses of chemo which didn't shrink the tumour at all.
2. At the age of 5 she started wearing a back brace for her progressing scoliosis which developed after the surgery to remove part of her tumour when she was 4.
3. At the age of 9, my daughter needed an emergency surgery to remove her tumour inside her spinal canal as she started limping, tripping over and she had a terrible pain in her back, this was because of her tumour started growing and pressing onto her spinal cord.
- she had tumour resection (15cm long tumour)
- she had rigid spinal rods inserted along her spine to keep her spine stabilised
4. She is 10 years old now and doing really well!!

She will have few more surgeries to extend her rigid rods as she grows and her curver gets bigger (by cutting them and inserting sliding domino) and eventually a spinal fusion.

It's unbelievable how similar are daughter's stories are.
You now got me worried about the scar tissue which might form following her surgery in February. May I ask whether they put the back (lamina) of your daughter's vertebrates back following the tumour resection or whether they kept it pretty open? How easy or difficult was the second decompression?

Thanks and all the best.

Second decompression.
My daughter did't have her lamina put back on - in some places her spine was badly eroded and her cord was exposed in places already.
The second decompression was as difficult as the first one, but for me it was much worse because I was more aware of all the risks + what would I tell her if it didn't go as well as I made her believe it would?