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4826017 tn?1359737490

Chairi Children?

Hi, new to this, so bear w/me.  I feel like I'm attending an AA meeting... "Hi... I'm a Mom... I have a Chiari Kid..."  :)

In all seriousness... does anyone out here have a child with Chiari?  My little one had decompression surgery on Halloween 2012.  She's doing great.  She's catching up in areas she was behind in (crawling, talking, etc.), she's getting therapy for area's she's not (eating) and our Neurosurgeon gave us a sunny outlook.

After reading what I've read, I'm afraid to hear that her skull is going to grow back (b/c she's not done growing yet), and her symptoms will only get worse as she grows.  OR, could this be a case where we caught it early and prevented much of the symptoms that would've occoured as she grew up?

I know Chiari "is like a box of chocolates - you never know what you're going to get" and I know that "every Chiari patient is different" - but if someone has a child that's gone through this, I'd love to hear how they are years later.
5 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

There r several parents of children on the forum....and it may take some time to get a reply from them....

I can tellu that we r all different, and it is so true, but I know u r aware of that...knowing ur DD had surgery is one aspect, but what all did they do? lamenectomy and dura plasty?, Did they rule out related conditions?

The related conditions is what can affect how she heals.
4826017 tn?1359737490
She had a suboccipital craniectomy with a dura patch and a laminectomy.  She was only seen for her sutures afterwards, it's only been 2.5 mos., we've not talked about any conditions as of yet.
620923 tn?1452915648
COMMUNITY LEADER

  I imagine she had a CSF obstruction and needed surgery done quickly and that is y no other conditions were discussed....

I imagine she will return for a 6 month and a 1 yr post op visit.

In the meantime u could have other testing done by a NL or even ur PCP if the Dr is able to help....not all really know what to look for.

Do u know what type of dura patch she had? So happy that ur DD is moving forward and catching up in areas she was behind b4, so her surgery was successful, that is always great to hear <3
4826017 tn?1359737490
There actually wasn't CSF obstructed, but he thought with growth, there eventually would be.  He also told us that while there wasn't a rush to do surgery - why wait - as it would bring her much relief.

**In the meantime u could have other testing done by a NL or even ur PCP if the Dr is able to help....not all really know what to look for.**

- What would you suggest?

She had a bovine pericardial patch.
620923 tn?1452915648
COMMUNITY LEADER

  Well sleep apnea, tethered cord, syringomyelia, disk issues, ehlers-danlos, ICP, and POTS....

Those r the ones we all should get tested for, but the Children all should be checked for sleep apnea asap ....
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620923 tn?1452915648
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