diagnosis
as soon as my neuro-ophthomalogist walked into our follow up appointment on june 26, she seemed concerned. she did a few simple eye tests with me and said she would really like for me to get another brain mri - the one with contrast that she said she originally wanted to order for me.
i asked her why? i thought we had already ruled out a brain tumor. she said yes, but she was concerned about 6th nerve palsy, which could be easy to miss on an mri without contrast.
6th nerve palsy, or abducens nerve palsy, is a condition that restricts eye movements due to damage of the 6th cranial nerve. sounds pretty close to what i've been experiencing.
there are 12 cranial nerves on each side of your brain that control primary functions, such as your ability to see, hear, smell, taste, and touch. cranial nerves 3, 4, and 6 control eye movement:
- cn iii: oculomotor nerve, controls all eye movement except downward and outward eye movement
- cn iv: trochlear nerve, controls downward eye movement
- cn vi: abducens nerve, controls outward eye movement
my neuro-opthalmologist explained that sometimes meningiomas can grow on the meninges, a protective membrane layer that sits between the brain and skull, that can cause visual issues like double vision if it touches one of the cranial nerves controlling eye movement (read more about meningiomas here).
while a meningioma is typically benign and harmless on its own, it can become problematic when it grows in the wrong spot and disturbs a cranial nerve, causing loss of basic functions such as sight.
this sounded serious, and her level of concern was definitely alarming, but i was still operating under the belief that (a) it would be impossible for a radiologist and two neuro-ophthalmologists to miss a brain tumor on my initial scan, and (b) sure i've heard of people getting brain tumors, but what are the chances that would happen to me?
turns out, anyone with a brain can get a brain tumor.
the next day, her office called me and said they had scheduled an mri for me on sunday (three days after my appointment with my neuro-ophthalmologist). typically when a doctor orders imaging for you, it's your responsibility to get it scheduled, and it usually takes a few days for the order to process. i don't think i've ever had a doctor's office proactively schedule on my behalf and do so in such a swift manner. their sense of urgency definitely raised a few more red flags in my head.
on sunday, june 29, 2025, i went in for another brain mri at 9am. an hour after i left the hospital, my results were in: i had an extra-axial meningioma along the right clivus and petrous apex covering the right Dorello canal, likely affecting the right cranial nerve vi.
Extra-axial Spaces: Plaque-like homogeneously enhancing mass is present along the posterior right clivus and petrous apex measuring approximately 5 mm in thickness and 18 mm in diameter. Mass abuts or nearly abuts the pons. Mass extends superiorly to the level of Meckel's cave and covers the right Dorello canal.
it's small, but that little penny-sized mass managed to wedge itself into one of the hardest to reach places in the base of my skull near my brain stem and several of my cranial nerves. surgery would prove extremely difficult if not impossible, and radiation might be my only option.
on the one hand, i was relieved to finally have a diagnosis - something tangible to point to as the cause of my double vision that wasn't merely stress. on the other hand, i now have to accept the difficult reality that there is a tumor in my brain that will be very difficult to get out and i may have to live with permanent cranial nerve deficits for the rest of my life.
i would spend the next few weeks speaking with surgeons, researching, over-researching, panicking, calming myself, laughing, crying, and existing.
next: decision