Hello to everyone on this forum. My name is Lura and I am the mother of Alex, a beautiful 17 year old (ugh!) boy with Down syndrome. Alex had scoliosis surgery at the end of March 2005 (14 vertebrae fused). We have had yearly x-rays to ensure fusion. In June we went for what I thought would be the final x-ray ~ but it was not meant to be, as Alex has a broken rod.....So now we are waiting and watching and will ultimately end up with surgery number 2. This forum is amazingly supportive, it saw me through Alex's first surgery. My computer crashed 2 years ago and I lost contact information as well as this site ~ life got busy and I never managed to look back, until now. So I am back and I hope I can support others, as well as get infomation from anyone who has experienced what we are about to go through.
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Lura,
I'm so sorry that your son will need a second surgery. Hopefully it will go smoothly and he will fuse properly.__________________________________________
Debbe - 50 yrs old
Milwalkee Brace 1976 - 79
Told by Dr. my curve would never progress
Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
Pre-Surgury Thorasic: 66 degrees
Pre-Surgery Lumbar: 66 degrees
Post-Surgery Thorasic: 34 degrees
Post-Surgery Lumbar: 22 degrees
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Hi Lura,
What are you waiting and watching for? Doesn't the rod definitely need to be fixed?
I hope the second surgery fixes the problem and he never needs another one for his spine!
Good luck with everything,Laurie
Mother of Alexander & Zachary:
Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
Zach is 13 years old and very energetic.
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Hi girls! Thanks for the notes. Alex's right rod is broken and they tell me they are waiting to see if the left rod breaks, or if the right rod slides further off. The break is clean through but the two pieces still sit together. Alex appears to be in more discomfort daily. Going down stairs seems to jolt him, and getting in and out of the car or bed is becoming increasingly difficult. He doesn't complain except for the occasional "ouch." His mother is not fairing so well I am afraid. The unknown kicks my butt!! I hope this finds you and your family recovering well!
Lura
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