Just doing my best over here to chronicle my chronic condition with alliteration, humor, and a whole lot of spoons!
All tagged cavernomas
That would be my neurologist, she’s great. She listens intently, reviews my scans with me, and often has to remind me “if you have brainstem surgery, you will die”, not in a pessimistic way—but very realistic and necessary for me to hear.
There's a lot of good information for those newly diagnosed with CCM OR for family/friends to understand a bit more OR general good advice for chronic illnesses OR ya' know being jealous of brain surgery (yes I'll admit I was, until I realized that was ludicrous).
I needed to learn that while I can’t fix my daughter, I can be present with her, I can be there, hold her hand, help her maneuver through this new “normal” that is her life and ours.
For anyone on pins and needles as to the outcome of my appointments with Dr. Awad in Chicago, here goes:
