Archive post two: CCM life & a third opinion
Originally posted on November 29, 2016 on private blog edited for myinvisiblebff.com.
For anyone on pins and needles as to the outcome of my appointments with Dr. Awad in Chicago, here goes:
- Stable cavernomas! yay! plus, we added one more to the party--for anyone keeping track, that's 6.
- The slow moving roller coaster of healing is normal! (whew! that was huge for me to hear. Even though it's one step forward, and two steps back--I've made some big gains since the bleed in Sept.)
- Yearly MRI's at the U of Chicago (I have two neurosurgeons in two states--boom. Sorry to brag y'all)
- Candidate for clinical studies (furthering research--high five!)
So yeah, here's what I'm doing in the meantime while I'm healing from this [brainstem bleed].
- I have good and tough and frustrating moments. From walking (cane or walker), eating (plates? forget about it. bowls and spoons baby), and sleeping (so. tired. so, so tired), to laughing too hard. I learned that last one at Thanksgiving, thanks family...paying for that one was well worth it.
- PT & OT twice a week, ST & TT once a week, and mostly doing my homework! I'd give myself an A for effort for sure.
- Living with the original roommates (ma and pa) until I can drive and live on my own again (the latest return to work is mid-March)
While trying to simultaneously not think about it, and becoming an "expert" on my dis-ease, I wanted to share some things that I get questions about.
Yes, this is a thing...a lifelong thing until they find a cure. The only treatment is surgery, which unfortunately I'm not a candidate for because of the big ass cavernoma (25mm) in my brainstem. There is a risk for bleeds each year after you have one. Symptoms range from stroke-like (most of what I'm going through) to a plethora of other things. Growing new cavs is possible. There may be a genetic component to my specific case.