post op advice for my 9 year old

[amyrvw]

Hi group,

My nine year old daughter has been diagnosed with Chiari type 1 in the few weeks. Rather progressed.  We went to both a neurologist and orthopedist when her symptoms began two years ago and were sent away.  It wasn't until she was given a diagnosis for scoliosis and follow up xray that they discovered the chiari.    She has a syrnix that her surgeon says is the largest the has seen.  It starts at the top of her spine and goes all the way down into the lumbar part of her spine.
Her surgery is less than 2 weeks away now and I am desperately trying "get ready".  Are there any other parents out there with advice?  What can I expect after surgery?

[selmaS]

  Hi amy and welcome to the Chiari forum......

I am not able to give you the perspective of a parent with a child going thru this, but I did go thru the surgery myself if you find that helpful let me know....

Post op, she may feel fine and want to do more then may be good...the pain meds leave us feeling so much better then we have  for so long we try to do things too soon and this can cause set backs...so keep her occupied with things like coloring or listening to audio books...that one was the best for me...it allows our brains to heal....not using any part of it to do anything and it is a trauma to our entire body and just using our eyes to watch TV can be a strain......it takes time to heal, so rest, rest and more rest is the best advice I can offer for her.

If you have any other questions let me know.