decision

30 Jul, 2025

one month after receiving my diagnosis, i've finally made a decision about what to do with my meningioma(!!)

the limbo period of trying to determine the best course of action for myself while receiving and digesting conflicting opinions from experts was one of the most stressful periods. i felt like i was stuck on a rollercoaster ride i never wanted to be on, and there was no way off until a decision was made.

out of the seven neurosurgeons and two radiation oncologists i spoke with, only one unequivocally recommended surgery.

while my meningioma is on the smaller side at only ~18mm long (image here), its location is less than ideal. unlike many tumors that are shaped like a ball, mine is growing along the petrous bone like a thin layer of plaque. the petrous bone, or petrous part of the temporal bone, is one of the most basal parts of the skull¹ and sits very close to many of the cranial nerves, including the one that controls outward eye movement (the one affected by my meningioma).

because of the tumor's deep location in the skull base, close proximity to many cranial nerves, and plaque-like nature, there is an extremely small chance it could be fully removed through surgery. not only would total resection be near impossible, but the risks of cranial nerve damage in the process would be relatively high. damaging a cranial nerve can result in permanent deficits like loss of vision, hearing, smell, facial sensation, and the ability to swallow or speak.

despite all of the risks, one surgeon still felt confident he could perform the surgery with a 50-70% chance of total resection and symptom relief and a very low (<1%) chance of nerve damage. i had two calls with this surgeon - the first one only two days after my diagnosis and the second one two weeks later - and felt pretty convinced after both calls that surgery would be the best option for me. i even scheduled a surgery date with him after my second call just to get a date on the calendar. after all, my only shot at not having a tumor for the rest of my life would be through surgery - even if the odds of total resection were low. radiation can only stop the tumor from growing more but can't make it disappear.

i have a strong natural inclination toward higher risk, higher reward activities and have lived most of my life this way. i've taken chances that most wouldn't - quitting my job as a lawyer to travel the world, starting my own business, changing careers even when it meant taking many steps down, moving cross-country from a big city to a small town - and i've done it all decisively and without regret. but getting my skull cut open seemed to carry with it much heavier consequences than anything i'd done before, and i knew i had to act with extra thought, consideration, and caution. i knew that if there was one time to be more conservative in my decision-making, it would be now. i knew i had to speak with more surgeons before i'd feel confident making a decision.

the other eight neurosurgeons and radiation oncologists i spoke with had varying opinions but all more or less agreed that surgery would not be my best option. one surgeon framed it well: he said the options i should be weighing aren't surgery vs. radiation, but rather surgery + radiation vs. radiation alone since it would be nearly impossible to remove the entire tumor, and i would need radiation afterwards anyway. hearing all of these top skull base surgeons (whose favorite thing to do is operate) tell me not to get surgery sent a loud and clear message.

meanwhile my double vision actually felt like it was improving for the first time since may. on july 23, 2025 i was able to hold single vision looking straight ahead while in a moving vehicle for at least one minute, which was a huge breakthrough for me. prior to this and since the onset of my double vision in early may, i've only been able to hold single vision for 1-2 seconds at a time.

it's hard to say if this temporary improvement was caused by decreased stress and inflammation over the last couple of months as i've taken time off work or my brain adapting to the new normal, but it gave me an ounce of hope that perhaps i could achieve single vision again and perhaps even the tiniest shrinkage in my meningioma from radiation would be enough to offer full symptom relief. suddenly i was overcome with dread at the thought of undergoing surgery and developing brand new deficits that i never previously experienced and having to learn to accept and adapt to those deficits all over again in the same way i've been struggling to accept and adapt to my double vision over the last few months.

my ninth and final consult was with one of the best skull base neurosurgeons in the country who i knew had performed numerous similar operations. he joked that as much as he would love to operate on me since he's a surgeon and performing surgery is his favorite pasttime, he sees no point in doing it in my case since there's no chance of full tumor removal and a high chance of nerve damage leading to new deficits. we love an honest doctor with a solid sense of dark humor.

whether it's because i finally have a plan of action i feel good about or because i know i won't need to get my skull cut open, i feel a sense of relief for the first time in a month. i'll be pursuing gamma knife radiation at ucsf in the near future and hoping that goes well and will be enough to offer the symptom relief i'm looking for.

send good vibes!

next: treatment plan

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