When is Surgery Ordered

General
1

Hi I am new here. My daughter was diagnosed with Chiari type 1 in May of this year when she was 14 mths old. Though the MRI they found it on was from when she was 11 mths old. She has since had a Cine MRI and the findings were her right side tonsil is 10mm/1 cm and her left is 6 cm. She has moderate crowding at the cranioal junction and her right tonsil extends to the C1? She also has mild restrction of her CSF flow. She is now 18 mths old. We dont see the neuro surgeon until 10/31. It was supposed to be in August but she ened up in the hospital for a non chiari issue and so the appointment got pushed back. I have been doing research (which is how I found this site :) ) and it seems that they may suggest surgery....but my family dr seems they will do a wait and see approach. I am not sure what would be best. Any advice welcome.

Thanks!

2

Thanks! :)

Emmaline said:

Hi Stephanie, and welcome!

Hopefully some parents will weigh in here, but the pediatric NS are great! They really guide you through the entire process, you'll get more information when you meet. Each case is different, but from what I hear from parents is that children really heal quite fast if they end up having surgery.

Good luck with your appointment, and stay on here to learn as much as you can before you get there. On the resource page there are some links to help you. Even questions to take with you on your visit.

3

Thanks Beeba! I will let you know and i have already joined the parent group too!

Beeba said:

Stephanie - please join the parents group as well. Adults usually discover this later in life so we tend to deal with problems that time has made worse. Children do way better and from what I hear the parents biggest complaint is keeping them down and quiet after surgery. For adults - the decision for surgery is mostly based on symptoms then add the MRI to the equation. But in general if you find it you were having problems.... The tonsil herniation is more of another symptom or sign - the crowding and restricted flow is the bigger issue. I have heard of people with a huge herniation but no symptoms or restricted flow - they usually get the watch and wait approach. Then people (like me) have a minimal herniation but every problem in the book. My skull internal measurements were very tight and blocked fluid. I had surgery immediately. Good luck with your appointment. Please let us know.