Hi, my name is Kristy. I am new to this board. I had a question about the growing rod.
First, my daughter is 6 years old and has Prader Willi Syndrome. She was diagnosed with scoliosis when she was 1 years old. Since then she has been braced about 22 hours a day, without stopping the progession of the curve.
Her scoliosis is over 60 degrees. In January she went in for surgery to put in the growing rod. In February, we had the doctors check her because there was a discharge from her incision. They admitted her and did surgery that day to remove the rod. It broke loose from the bone and was actually poking through the skin in her back.
Today we found out we need to brace her some more and then attempt to do this same surgery again (in 2-3 months) with extra reinforcements (wires) to keep the rod in place. We are going for a second opinion next month to see what other options are out there. Has anyone ever heard of this ever happening?
We are really concerned about this and feel like we are at a complete loss.
Any words of advice would be appreciated.
Thanks,
Kristy
First, my daughter is 6 years old and has Prader Willi Syndrome. She was diagnosed with scoliosis when she was 1 years old. Since then she has been braced about 22 hours a day, without stopping the progession of the curve.
Her scoliosis is over 60 degrees. In January she went in for surgery to put in the growing rod. In February, we had the doctors check her because there was a discharge from her incision. They admitted her and did surgery that day to remove the rod. It broke loose from the bone and was actually poking through the skin in her back.
Today we found out we need to brace her some more and then attempt to do this same surgery again (in 2-3 months) with extra reinforcements (wires) to keep the rod in place. We are going for a second opinion next month to see what other options are out there. Has anyone ever heard of this ever happening?
We are really concerned about this and feel like we are at a complete loss.
Any words of advice would be appreciated.
Thanks,
Kristy
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