I met with Ennio Chiocca at Brigham and Women's/Dana Farber earlier this week. He will do my surgery to remove the presumed Oligo 2 from my left frontal lobe. It will be awake surgery. Currently we are planning to do the surgery around mid-November to allow me to nurse our newborn until he is at least 6 months (I'll try to continue after the surgery but this way he'll at least get a solid 6 months of nursing for sure).
I like Dr. Chiocca's nature and the positive things he had to say about my prognosis. Has anyone worked with him? What he said that stood out is that there is a good chance this tumor won't come back. I questioned him in that, since no one else has said such a thing. He said technically this tumor was only discovered in 2008 (IDH and co-deleted), and so we can't say for sure how they function and it could be that they don't always come back. He said there's an 80% chance it will not be back in 10 years. Thoughts on that?
Like others, though, he was not able to address the other symptoms I'm experiencing (sense that my left eye is bulging slightly, blurry spot in my left vision, drop in BP since the seizure, etc.)
Can someone talk about how they measure these things? UVM measures it as 2.9APx31.5transverse x 1.7 craniocaudal. BW has it at 3.3AP, I'm told that's a trivial difference. It didn't grow during pregnancy (at least not after it was discovered), so that seems positive.
Additionally, at my last check up with my local NO he mentioned a second spot. It is a white matter lesion 3mm, nonspecific. Everyone has told me not to worry about this but it seems worrisome to me!
Thanks for any input.