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.
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.
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
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.
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 ....