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Old 1st May 2014, 06:52 PM
Hope for HB Hope for HB is offline
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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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  #2  
Old 1st May 2014, 08:20 PM
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tonibunny tonibunny is offline
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Default Re: Help!!! Suggestions needed

Hi there, welcome to SSO

I'm really sorry your daughter is dealing with all of this. The fact that you mention that she has one rod which "hooks to the top of the ribcage" hints to me that she may have a specific type of growth rod known as the VEPTR, or "Titanium Rib". This is often used in complex cases of congenital scoliosis such as your daughter has; traditional growth rods typically attach to the spine itself.

It may be possible for your daughter to have magnetic growth rods, though these are far less likely to be used in cases of Congenital Scoliosis than in cases of Idiopathic Scoliosis (which tend to be a lot more straightforward) and they may not be available in your part of the world yet. This is something you will need to ask your daughter's surgeon about. Hopefully one of our US parents will reply to you; you may also like to ask for advice at the National Scoliosis Foundation of America's forums at www.scoliosis.org/forum .

Welcome again
Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 2nd May 2014, 09:34 AM
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GillyG GillyG is offline
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Default Re: Help!!! Suggestions needed

Oh it makes me so sad to hear how your little daughter is suffering I'm afraid I can't give any more help than Toni has already given you, but I do hope you can access further help for your daughter and, in the meantime, we are always here to listen and support you in any way we can. Welcome!
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Old 20th May 2014, 11:59 AM
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Andis Andis is offline
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Location: NC, USA
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Default Re: Help!!! Suggestions needed

Welcome! I have been missing for a minute but I popped back on and found someone in my neighborhood! I live in Pittsboro, work at UNC, and my daughter is treated at Duke. Her case isn't as complicated as your daughter's is but they are close in age (mine is 4). I know the magnetic rods haven't been used in the states for very long and I'm honestly not sure if Duke or UNC has them for an option. I would call and ask as a general question.

Good luck and hugs to both of you!
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Old 22nd May 2014, 09:14 PM
Babeechow Babeechow is offline
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Default Re: Help!!! Suggestions needed

Didn't want to just be a read. Wanted to send you and your daughter a hug. I'm so sorry she's going through so much pain. I hope you are able to find her the help she needs.
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