Tuesday, May 3, 2011

It's Called a Chiari Malformation, Type 1...

It has been a busy few weeks. When are they not, for any parent? It has been a busy few weeks for us, filled with doctor appointments and scans and school upheaval, for Little Miss O. Things I have learned during this time:

If you have an MRI, they are going to find SOMETHING. Look over the laundry list
of discoveries and decide what is important, and what is static.

What a Chiari Malformation is.

So Olivia woke up one day with one of her eyes looking at the bridge of her nose. After consulting with the opthamologist, we decided she needed a deeper evaluation, so with the help of a very nice anesthesiologist, she had an MRI. Within an hour of our coming home, we had a call from her Pediatrician, our wonderful Dr. Carol Endo, with some results. As all MRI evaluations should go, she started out by telling me what it WASN'T: it wasn't a tumor. This would be a mantra I would repeat often in the following 24 hours. It puts everything in perspective. It's not a tumor. Part of her skull is pushing her brain stem into her spinal canal. It is causing pressure on her dural sack, and is most likely contributing to her eye wonkiness. IT WILL NOT KILL HER (part of my mantra). But if not treated, it can lead to migraines and some paralysis.

She will need surgery. What kind of surgery (removal of part of the bone or just "shaving" the bone), and when are still to be determined.

And because I am a dork, I googled "Chiari and Autism". Connection? No connection? Well, some connection. It can aggravate some sensory problems, for example, when her eye is crossed, she stims more and is cranky (I would be cranky too). The surgery can alleviate this in most patients with an ASD.

Good times.


  1. Oh man, Mama. Big hugs your way. If it makes you feel ANY better, I have 3 adult patients with CM and they are all happy, healthy and manage any pain/symptoms really well.

  2. Oh my goodness. This is why I should be checking your blog or sending emails your way more regularly.
    Take deep breaths. Try not to freak out often (yeah right) and be positive. It seems like your friend Korin knows what she speaks of. I'm sure that Little O will come out of this just fine!