We had an MRI a few weeks ago and the results were stable, thank goodness.
The confusing part is that the oncologist said the tumor looked the same, but he said that radiologist actually said that it looked like it shrunk.
We finally have a diagnosis!
After 4.5 years, we finally know that a schwannoma tumor, caused by the fusion of two genes, is the cause of Zuzu's issues.
"Jack" the brain lesion
Related to: head tilt
We got a second MRI in July 2021, and to our complete shock, we learned that a lesion (a nice way of saying brain tumor) is what likely caused her cerebellar hypoplasia and all her related symptoms. I've nicknamed it "Jack" for really no reason whatsoever, but it helps me handle the overwhelm from this.
Back to square one...
We recently went to our ophtamologist for a routine check up. There, we brought up my daughter's chronic head tilt. Long story short, she wanted to go back to her initial MRI to see if her cranial nerves related to her eyes were damaged. She recruited a separate radiologist who said they might be, but it's too hard to tell.
The funny thing is that we are now engaged with the very neurologist at NYU that first told us NOT to get an MRI. Now we're being told to get a repeat MRI immediately. We may also be looking at strabismus surgery.