Chiari Online Support Group

Abbey update!


#1

It has been 11 months and three days since Abbey (she has changed how she spells her name to Abbie) had her surgery.

I haven't been on here much but life is just crazy. I'm in my final class for my B.S. Psychology - Crisis Counseling, and my husband has stage 4 kidney. He was diagnosed in October 2013 and progressed to staged four in six months. We just got back from a meeting with the kidney transplant team out at University of Washington.

Back to Abbie :)

She has some sort of migraine syndrome they just don't know what type for sure yet. Dr. Ellenbogen told us she has both Classic and Complex Migraines. The Neurology team out at Mary Bridge is doing extensive limitations with her to see if they can find her triggers and I finally have an answer about her face swelling. It is a her body's pain reaction to her headaches! I can predict when she will be in bed for three or so days due to headaches by her face swelling. Nice to know, and have the doctors confirm, that I'm not crazy and it is connected to her headaches lol

So here is where we are:

At this point her Chiari is stable and she has no problems with CPF flow to her brain, no Syrinx and no herniation!

Headaches are still present and affect her ADL'S. This is not from Chiari but from a migraine syndrome that we are still trying to pinpoint.

She was given accommodations for COLLEGE! That's right Abbie graduated from high school and got accepted to college. She starts June 23, 2014!