Hey all,
Leading up to my surgery, I really appreciated all the reports from others who'd gone through it, so I thought I'd contribute my own. I'm a reasonably fit, Chicago-based 41 year-old man who, last Sep-Oct, experienced rapid moderate hearing loss in my right ear. I'd had some mild tinnitus in there for about 5 years, but wrote it off as the result of too many basement punk shows when I was a kid. When I finally saw an ENT/Audiologist in November, they proscribed a hearing aid and an MRI "to rule some stuff out." Obviously, the MRI ruled stuff in.
The results of the MRI showed a 22mm vestibular schwannoma emerging from my right auditory canal into the cerebello pontine angle, and pressing up against the brain stem. I took consults with three surgeons (two local in Chicago and also UCSD), as well as a radio-oncologist. Everyone agreed that the opportunity for radiation was past, especially for someone younger, such as myself. The two Chicago surgeons both recommended a translab approach, whereas Dr. Schwartz at UCSD was confident in the appropriateness of a retrosigmoid approach, which held the prospect of maintaining my hearing in my right ear. I'm a music lover and felt I owed it to myself to try for the more ambitious surgery, though I knew it can present more complications.
I'm extraordinarily pleased to report that the surgery was a near-total success. I emerged from surgery with my hearing basically in the same state that I went in, and the tumor fully removed. I've experienced no complications with respect to my facial nerve. Obviously, I'll need an MRI in a year or so to fully confirm the removal, but all signs point to it being gone.
The 36 hours or so, post surgery—I'm not going to lie—they sucked. The world was wobbly, and I did little more than nap, but since then I've been up and about, walking around the neuro ward, and practicing my PT. I can read, watch movies, and post on Reddit. I'm certainly not 100%, but I'm honestly shocked at how good I do feel, considering my brain was on display 72 hours ago.
I know that surgical results vary, and I came into this relatively young and in good health, so please no that my situation is not a guarantee. But please know as well that this does not have to be a nightmare. There are good surgeons out there that can perform some truly amazing feats. Please do your research, and prepare the best you can, but there is hope for many who suffer from this condition.
While I'm thinking of it, a few tips I wish I'd known:
I actually brought a shower stool with me. It's pretty unnecessary. I think that would still be the case even if I were struggling more in my recovery.
Speaking of stools, if you take any opioids, take the stool softeners as soon as they're available to you.
The UCSD Medical Center cafeteria makes a surprisingly good bowl of pozole.
San Diego has a wide range of micro-climates. When I planned my clothing for my extended stay, I failed to understand that my Airbnb is near La Mesa, about 15 miles inland, and therefore 20° warmer than the San Diego waterfront.
Work with the UCSD team to schedule vestibular therapy at your local hospital for after your trip. Do so well in advance of your actual surgery, since they book out in advance. It'll be one less thing to worry about while you're doped up and recovering from surgery.
My Airbnb's ample collection of shot glasses is serving me well as a way of organizing my many, many pills.
