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.
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.
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.**
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.