Hi all! My 14 year old daughter was diagnosed with a “significant” syrinx as an incidental finding on an MRI and then diagnosed with Chiari (she was 11 at diagnosis). She was asymptomatic of Chiari and syrinx but decompression was undertaken as there was concern about the width of the syrinx. Without going into huge detail she never really felt well after the surgery and eventually developed all the telltale symptoms of Chiari. It was decided to repeat the decompression almost in Oct 2015 and replace her duraplasty with an autogolous one. She did well for a bit and then once again developed symptoms. Her MRI shows brain slump, BI, RO and syrinx is back to original size. She recently had an ICP monitor inserted and does not have increased pressure so no need for a shunt. It has been suggested that her surgeons could repeat the decompression but with brain slump I am really worried to do any further surgery that might make her worse.
She is really suffering and missing out on so much of what a 14 year old should be doing!
So now for the questions!!!.1. Has anyone on here been sucessfully treated for brain slump? 2. She has significant headaches and nausea and we are considering CBD oil…I am looking for anything to help her with the nausea…3. We are in Canada and will travel to the US for a chiari specialist. We are waiting for a review from Dr Frim and wondered if there were any other surgeons that work with kids that would be recommended. Thanks very much!