I want to emphasize on this Number 1 survival skill for Neurofibromatosis patients. I will say it quick and straight to point so it hits home.
The first thing to do is find a surgeon who can remove a specific tumor safely.
Remove the tumor surgically once and for all safely.
Neurosurgical skills today is already very advanced, can do almost anything. Just need to find the right surgeon. Radiation is a second best option in most situations.
Do not fear pain, be brave, because the fear of pain will not help you to survive. This is my survival skill I learned from my own life experience as an NF2 patient.