A facial nerve schwannoma is a benign and extremely rare tumor that grows on Schwann cells on the outer sheath of a nerve. My tumor is on the section of the facial nerve in my left internal auditory canal (IAC), where nerves emerge from my brain into my left ear. Nerve tumors in the IAC can grow into the brain and eventually push on the brain stem. Even small benign tumors like my facial nerve schwannoma can have big symptoms as they impinge on nearby nerves in tight spaces in the brain and inner ear.

My tumor measures 3mm wide as of early 2023. That’s pretty small. The facial nerve is about 1mm wide, so my tumor is about 3 times wider than its host nerve. That’s pretty big. My tumor is unusual because it grows inside my facial nerve, intrinsic to the nerve itself, which makes resecting the tumor impossible without severing my facial nerve and grafting in a replacement. I had one brain surgery in 2021 to attempt a resection when we believed I had an acoustic neuroma. Surgeons stopped when they observed my tumor to be on my facial nerve. The plan since then is to manage the symptoms from facial nerve damage and wait for the right time for a facial nerve bypass surgery. That procedure can prevent the left side of my face from becoming paralyzed. If the tumor grows, I will eventually need another brain surgery to remove it. Both of those surgeries are life-impacting medical events. I am approaching them slowly and with expert guidance from my medical team.