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Old 30-06-2010, 01:33 PM
Patricia Patricia is offline
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Join Date: Jun 2010
Posts: 25
Default Looks like 2nd surgery for my 15 year old!

Hi all,
Firstly I'm so excited about the creation of this forum!!! Yayyyy!!! For so long been on the American one so 3 cheers for whoever finally got this off the ground. We needed it badly! Pity about the no mentioning of Dr Names.... sometimes a recommendation can really alleviate concerns, never mind!

Well, here is our story... Leash had her surgery Feb 2008, 2 weeks short of her 13th birthday. She was 46 degrees or 48 (can't remember) with major rotation in her thoracic region. Can never understand why they say Scoliosis doesn't cause pain, because Leash was having days of terrible rib pain.
She was fused in Sydney, T5 to L1 with a Thorocaplasty - removal of 5 ribs to reduce her rib hump and derotate her.

Surgery was a success except..... on the operating table surgeon discovered her pedicles too small and had to use hooks on her instead.

I guess normally this wouldn't be a problem but.... E was only Risser 0.

Everything was going fine and at the 6 month check up - beautiful correction! Then disaster struck.... towards the end of that year after Leash had an enourmous growth spurt I noticed the curve back!! X-rays revealed that there had been some crankshafting through the thoracic region along with a tilting of the L2 vertebrae, told that that was a seperate issue, but this lay person feels when you twist one end, the other end can only protest.

Surgeon advised going back in for a 2nd surgery, taking out rods and extending fusion down to L3, which is apparently the magic number for flexiblility. Problem was we were told, it could get worse, it may stabilise! What to do??? Problem was... why put your child through another surgery IF IT IS GOING TO STABILISE. We took the gamble and decided to play that horrible part of the Scoliosis game.... wait and see!

Well, Leash's rib hump is now back, almost to pre-surgery, her hips are back to totally being misaligned and the worse part is she's having days of excrutiating pain! Not every day, most days its just an ache, but yesterday she collapsed coming off the school bus in agony. Freezing weather didn't help.

I really hope that Leash's case is promoted in the Spine Surgery world of the importance of measuring pedicles prior to surgery.

With the advanced technology using pedicle screws - there is now no need to perform Anterior fusions prior to Posterior on a risser 0 child.... but in E's case if we had known about the Pedicle issue, we could have delayed surgery and waited for her Risser to increase.

I'm so happy about this forum..... I see so much done in the community for sick kids, cancer camps etc..... I feel that sometimes these kids have NOTHING to turn to. No support NOTHING. In fact, when Leash first went into a Boston brace prior to surgery, she was given the brace and sent on her merry way.... no counseling, no support, no follow up appointments to see how it was going!!! The brace can sometimes cause more Physcological damage than the Physical repair it is meant to do. It was horrible!

I'm going to check in often and hope that I can offer support and advice to other Aussie families going through a very difficult time.

Cheers
Trish
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