Aa
A
A
Close
4826017 tn?1359741090
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.
Cancel
5 Answers
Page 1 of 1
620923 tn?1452919248

  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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4826017 tn?1359741090
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
620923 tn?1452919248

  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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4826017 tn?1359741090
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
620923 tn?1452919248

  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 ....
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Your Answer
Avatar universal
Answer
Do you know how to answer? Tap here to leave your answer...
Answer
Answer
Post Answer
A
A
Recent Activity
Avatar universal
Blank
Huskergirl1 joined this community
Welcome them!
9 hrs ago
620923 tn?1452919248
Blank
selmaS commented on selmaS's status
Sep 17
Avatar universal
Blank
Top Neurology Answerers
620923 tn?1452919248
Blank
selmaS
Allentown, PA
1306714 tn?1327260680
Blank
linnielou232
muskegon, MI
7530528 tn?1428275172
Blank
AKC_75
TX
Avatar f tn
Blank
KerriC1
979826 tn?1389039958
Blank
soccero
germantown, MD
Avatar f tn
Blank
lasel22
Chiari Malformation Community Resources
Top Neurology Answerers
620923 tn?1452919248
Blank
selmaS
Allentown, PA
1306714 tn?1327260680
Blank
linnielou232
muskegon, MI
7530528 tn?1428275172
Blank
AKC_75
TX
Avatar f tn
Blank
KerriC1
979826 tn?1389039958
Blank
soccero
germantown, MD
Avatar f tn
Blank
lasel22