New - 2 syrinx w/out Chari or Tethered Cord

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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New - 2 syrinx w/out Chari or Tethered Cord

Postby JenandLuli » Thu Sep 06, 2007 11:48 pm

HI! I am so glad I found you guys! :D I'm Jen and my daughter is 21 mo. old Luli.
Today she was diagnosed with 2 syrinx - a smaller one at C6 and a larger one in the lower spine. :cry:
Luli initally had an MRI done of her whole spine because she has unresolved torticollis and a CT showed rotatory subluxation. She also has a med size birthmark on her lower back that concerned the Neurologist.
The Neuro said that there was no Chari or Tethered cord - and she thinks the syrinx are small enough that surgery is not needed at this time. :)
Luli was born with leftside facial paralysis then diagnosed with torticollis and plagiocephaly. She wore a cranial remolding band for about 6 mo. with good results. She has always moved the leftside of her body funny - It is still tight though the movements seem to be more normal now. An MRI of her brain @12 mo showed no brain damage. Luli also has facial asymmetries - mostly in her jaw now. The band corrected most of the eye.

The Neuro was unclear as to if the syrinx are related to the torticollis (a cause of, caused by or unrelated at all)
We will see a spinal surgeon at CHLA in Nov. - We have Kaiser Permanente insurance and so every dr we see is in-house.
Sorry if this is long - I just wanted to paint a complete picture of my daughter to see if there are any similarites between her and others.
Thanks!
Jen and Luli
JenandLuli
 
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Joined: Thu Sep 06, 2007 10:58 pm

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