Chiari Malformation

cooperme2871

On my son's MRI, it was noted that he has a Chiari 1 Malformation. The neurologist told me that at this point it is just something to watch in the future if he starts having headaches, or symptoms. Everything I'm reading says surgery. Is this something to just to "watch" or should I get a second opinion?

cooperme2871

Grace0609 said:

Btw, for something like this, I would get a second opinion. This is a serious operation if they need to do it, and I believe second opinions are important for the child as well as parental piece of mind!!

Do you happen to know the support groups you found? I'm trying to gather as much info as I can. In the meantime, we are getting his MRI scans and getting a second opinion. 

EmAre

We learned our daughter had a CM1 last year. At this time, her flow of spinal fluid is great and we don't think the Chiari is the cause of her symptoms (autonomic dysfunction) so we are taking the wait and see approach. We were able to get a 2nd opinion and feel very confident in watching it for now. My daughter will have a brain and spinal MRI in a few months just to check the flow again as well as check for a syrinx.

There are plenty of groups on FB that have been helpful, but I have found many to be very "pro"-decompression. Just keep that in mind as you search for a group.

Good luck!