Jalena has always been clumsy we just thought she inherited it from my brother lol. She also has epilepsy which is inherited. When she started complaint of headaches we first thought from the seizures. They wanted to confirm there were no other issues so an MRI was done. Results were Chairi Malformationā¦they told us the pressure being placed on her spinal cord makes surgery her only option. She is so young and we are not sure what to expect 
The good news is that kids usually recover really well and fairly quickly from the surgery. Also pediatric neurosurgeons seem in general to be a lot more knowledgeable about Chiari.
Hopefully some parents will chime in with some first hand advice soon! :)
Bless her little heart! That's so awful for her to have so many troubles! But I agree with Anglyn-children do seem to recover much quicker and because it's caught so early, she will likely have a far greater chance of full recovery and having a wonderful life without many complications. For children, often times, the greatest risk is of general anesthesia.
I would suggest that they thoroughly research pediatric neurosurgeons in your general area (they are usually concentrated in a larger city) and I would also suggest a second opinion. If nothing else, a second opinion will provide some surety of their decision. Also, I would request they look into the other commonly linked disorders like Ehler-Danlos, dysautonomia, POTS, and others. You can search in the Discussions tab for these topics to find out more.
You are a wonderful aunt for seeking out resources and clearly this little woman will be successful with such loved ones caring for her! XOXO
Tina, so sorry your family and niece are going through this. One day you are looking for answers with the focus of a laser the next you are looking at brain surgery. Not the answer anyone wants to find but on the positive side there is an answer and hope for a better future for without so much pain, thank goodness. Know there are many of us who have gone through this surgery, many small children too, before little Jalena. With small children we all get a little more protective and āmomma bearā but as the girls said little ones tend to recover more qiuickly and adjust better. Has her surgeon evaluated her for cranio cervical instability? This includes:
Basilar invagination
Retroflexed odontoid
Sharp clivo-axial angle
And translational instability (abnormally large amounts of movement in cranio cervical joint)
Please keep us up on how she is doing and if questions come upā¦
Jenn 