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Old 1st May 2014, 05:52 PM
Hope for HB Hope for HB is offline
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Join Date: May 2014
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Default Help!!! Suggestions needed

My daughter was born with several congenital abnormalities, she is now 5. She has already had surgery for her tethered spinal cord and for the syrinx . Last year she had the growing rod placed and did well at first..... Hannah doesn't walk but she goes to school in her chair and loves to do as much as she physically can. She has very low muscle tone and her scoliosis is worsening... her first extension showed that the hooks that wrap around the rib at the top, had actually rubbed and broke her ribs. The rod was freely moving, which had not showed on X-rays. The Dr. was very upset that he had not listened to our pleas that she was in a lot of pain and couldn't even lay on her back. We have to roll her with pillows under her for diaper changes. She wears her back brace 24 hrs a day only taking it off for changes and baths. Recently the rod has started protruding up top again and she hurts again. X-rays show the rod is fine placement wise BUT her pelvis is still continuing to curve below the rod and causing pressure on the one rod she has. The discussion is to remove the one and put in two and have them extend down into her pelvis. We had a Cat Scan of her pelvis to see if this is even possible due to the fact her sacrum didn't form completely. Although she has no diagnosis of arthrogryposis , there are similarities with the way her bones are formed. I stumbled across this site and have just realized there are now magnetic rods that seem so much less invasive... Please I need suggestions on possible physicians. We live in North Carolina and her surgeries so far have been at UNC Children's Hospital.
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