Chiari Online Support Group

A mom on a mission

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!

As a mother myself, I can not imagine the school work she must be missing and how hard it must be for her to keep up with her studies. If there is no need for a shunt now, that is a fairly positive sign of a successful surgery right there. I have had decompression also. It doesn’t always make all symptoms go away.

To be honest, I have never heard of the term “brain slump”. It sounds like she has had 2 compressions, if I am comprehending your post correctly. What I can tell you is, and I feel like I have to speak for your daughter, possibly, don’t be so quick to let them do another one. It is not…an easy surgery to recover from at any age.
With going in, there are always risks as you know. I know I have suffered cognitively and my motor skills are off from mine.

I would seek alternative opinions with more… conservative answers. Reason being, if she doesn’t need a shunt, that is a sign of success right there. There needs to be time for healing. She will still have some headaches. Sometimes you have to give the surgeries time. (and when/if she is not around mom and dad doing 14 year old things sports, running etc) that could be increasing the pain, as well too.
Also, if she could possibly wait until after she turns 18 and is out of school, then time for healing could have happened. A. She might also decide she doesn’t even need another surgery B. She wouldn’t have had to miss so much school and won’t feel socially cheated with friends, homework, etc. skip school grades, etc.
To help with nausea, make sure she has access to lots of water and can get off her feet when she needs to. I am guessing she in not in any contact sports. If she is, probably not best at this time. Variations in hot/cold temps can bring on nausea, along with extreme scents. The Glade scents-air fresheners you possibly bring into the house (not saying you do) could be driving her over the edge with nausea. With Chiari, the senses are hypersensitive.