Finding My Way

First Opinion

On Friday May 23, 2025 I spoke to the ENT who performs surgery with the neurosurgeon from UCSF and I honestly did not love his proposed surgical approach.

Just to re-iterate, my meningioma is basically in the worst possible location, i.e. the skull base. As a medical professional, I can appreciate the anatomy of this region, what it takes to get there, as well as the consequences that may arise should something go wrong. This tumor is not only pressing on my brainstem, but has encased one of the arteries providing blood flow to my brain and partially encased others, and is displacing my fifth, seventh, and eighth cranial nerves. These nerves provide sensation to my face, control the muscles for my face and jaw, allow me to hear, and keep me balanced. As I stated previously it is truly amazing how few symptoms I have.

Now, the reason I'm not so thrilled about surgery is because the ENT wants to access this area of my brain via the translabyrinthine approach. Cool name, not cool consequences. The reason it is called this is because it involves drilling from the side of my skull and through the labyrinth of my inner ear. This structure is responsible for sending the brain information about where I am in space and it attaches to my cochlea which is responsible for hearing.

Therefore, the consequences of this surgery would be a significant impairment to my balance system as well as an almost guaranteed loss of hearing from my right ear. Fortunately, the brain does have some ability to adapt to the change in balance function and I can live with one sided deafness. However, I do not love this idea.

Second (third, fourth, and maybe fifth?) Opinion(s)

So, what now? I already started the process of obtaining as many opinions as possible before I make any decisions. Lately, I've done extensive digging into neurosurgery research articles on petroclival meningiomas. The approach suggested is widely used for patients with tumors in similar locations and as large as mine. However, I have come across information on a couple other approaches that I might be a candidate for and which might spare my balance center and hearing. I've reached out to three other institutions and am in the process of setting up consultations. More information to come.

I am hopeful for a way to spare my hearing and balance, but I also understand that sometimes sacrifices must be made in life. One sided hearing loss and balance deficits are things we can learn to live with. I know this as several folks in my support group are doing just that. All I can do for now is get as much information as possible and make the best possible decision with the information provided in order to have the best surgical outcome and resulting quality of life.