I Need Brain Surgery
And I Feel Fine
It all started about 4 years ago.
I was working at insiderpages.com and one day (it was a Saturday) I woke up and couldn’t hear very well in my left ear. At first I thought maybe it was just some congestion, so I took some decongestants and antihistamines and went about my day, only slightly perturbed by my new semi-deafness.
On Sunday I started to get worried. Just a tiny bit. But then I reassured myself, “You’ll see the doc tomorrow. No problem.”
On Monday I scheduled an urgent appointment with a doctor who was not my normal primary care physician. He did a quick evaluation and declared that I was suffering from something called “Sudden Sensorineural Hearing Loss” (or SSHL). Or in layman’s terms, “you lost hearing suddenly and we have no idea why.”
He prescribed me a low dose of Prednisone and an antiviral medicine, after explaining that the medical community has no idea if these drugs actually help but think that they might. He also referred me to a nearby ear nose & throat (ENT) doctor for followup.
At this point I was freaking out. By my own estimation, hearing in my left ear was about 60% of normal. Music has always played an important part in my life. I learned to play the guitar growing up and I actually minored in music at Humboldt State University (where I studied mathematics). Writing, recording and producing music has been more than just a hobby to me. While in college I was colloquially known as “Producer Steve!” and would be greeted as such by friends and strangers, alike.
So suffice it to say that good stereo hearing is kinda important to me.
After visiting the ENT, he affirmed that there was nothing more to do than take the medicines prescribed and wait. When I expressed my frustration — no causes, no real treatments, no information whatsoever — he said vaguely that I could go to UCSF, where they are performing cutting-edge research on SSHL, however if any breakthroughs had been made, they would have been published and he would already know about them.
Discouraged, I decided I’d finish my drugs and wait. As time wore on, hearing in my left ear gradually recovered. It still wasn’t (and to this day isn’t) back to 100%, however it got pretty close. After a followup at the ENT 6 months later, it was determined my left ear was back to about 95% of my right ear, and practically speaking, I had mostly adjusted to the change.
Fast forward to the beginning of December 2013. It was midnight and I had just finished watching the latest episode of Castle on my DVR. As I stood up something changed. The left side of the room was unnaturally quiet. I froze where I was and channeled Keanu Reeves: “Whoa.”
Hearing in my left ear was completely gone. I could barely hear the muah-muah-muah cackling of a Peanuts parent. My heart sank as I got ready for bed. I determined that this time I would get to the bottom of this and resolved to make myself an appointment at UCSF in the morning, while holding out hope that this was a bad dream and I’d wake up and be fine.
Morning came and I was not fine. I literally spent all day on the phone with schedulers at UCSF. Apparently they were not used to scheduling appointments without referrals from other physicians. It didn’t matter how much I insisted on an appointment with Otolaryngology (I knew my insurance would cover it and referrals are not required to see a specialist with my plan). I went in circles with the ENT’s office I had visited so many years ago trying to simply get my files faxed over. HIPAA may be slowly pushing medical care providers into the 21st century, but it has made acquiring your own records quite a headache. Faxing, really?!
Finally I managed to get my records scanned and emailed to me and I forwarded them to the schedulers at UCSF. When they casually scheduled me for a couple of weeks out, I explained in an irritated-but-trying-not-show-it tone of voice that if the time lapse makes my hearing loss permanent, I would be (1) crestfallen and (2) litigious. This finally got their attention and they scheduled me for an appointment a couple of days later.
Prior to my appointment with a human who would help me, they had to determine just how bad my situation was. I was personally still holding out hope that maybe I just had a really bad ear wax situation, so I went to the hearing test in good spirits. The audiologist administering my test was a very nice lady who started by examining my ears: no wax buildup. As the test went on, my mood worsened. The portion of the test where they speak words into your ears was the worst — no matter how loud she made the words, I only perceived them as loud, distorted quacking.
At the end of the test, she confirmed it: I had zero hearing in my left ear.
This is called “profound” hearing loss, which is worse than “severe” hearing loss. I couldn’t keep it together and I broke down crying as the audiologist excused herself to do some paperwork and leave me to my tears.
Friday of that week I arrived at UCSF Otolaryngology (say that 5 times fast!) to meet with an absolutely fantastic Physician’s Assistant (PA). I was briefly concerned that they didn’t schedule me with an actual physician, but after meeting my PA my fears were instantly allayed. She was professional, knowledgeable, caring, and most importantly, she was available.
My PA explained that they still don’t really know much about SSHL. However, they do now know that antivirus medications have no effect, but they still think that steroids might help. So she prescribed me high dose (60mg/day) Prednisone and then explained that they are trying intratympanic steroid injections (eg, injecting steroids through patients’ eardrums) as a sort of Hail Mary treatment.
Yikes. Efficacy? They’re really not sure.
Well, why the hell not? I was desperate to get my hearing back. The PA examined her schedule and with the realization that she and everyone else would be gone for holidays soon, we decided my first injection would be that very same day.
The injection wasn’t as bad as I thought it would be. Apparently your eardrum can completely recover from the tiny puncture wound a needle produces. The numbing medicine she used stung, but the following injection was simply uncomfortable. Afterward, I lay on my side, allowing the steroids to soak into my middle ear. I pondered what life would be like without stereo hearing. Not hearing a car zooming toward me, or inadvertently ignoring a coworker or friend talking to me on my left side. Never again experiencing a song mixed across stereo channels.
Stuck on an AM radio station for the rest of my life.
I departed from Otolaryngology with a cotton swab in my ear, absorbing the steroids now leaking out from the tiny puncture in my eardrum. I went home, filled my Prednisone prescription and took my first 60mg that same night. Over the next couple days I was reminded of the side-effects of Prednisone: irritability, sleeplessness, difficulty focusing. Combine that with depression about my hearing and I had a real bummer of a weekend.
But come Monday I was ecstatic. My hearing was almost completely back to normal. Prednisone really is a miracle drug!
Over the next few weeks I received another 2 intratympanic steroid injections, but I was personally convinced that the only thing working was Prednisone. As if to validate my assumption, when I started to taper off the Prednisone in January, I could vaguely detect my hearing slipping. Complaining to my PA, she suggested I taper slower, which produced better results.
She also said I should get an MRI with and without contrast. By the manner my hearing loss appeared—suddenly, two times—it was almost impossible to be the result of a tumor. However, she said that she always recommends that her patients get MRIs, simply as a matter of procedure.
Side note: MRIs are still expensive. And an MRI with and without contrast is billed as two MRIs.
As I came out of the impossibly tiny tube where they were taking images of my brain, I asked the technician how it looked. She said she didn’t know. I reasoned, “Come on, you’ve looked at thousands of pictures of brains, I bet you have some idea.”
To which she replied that she legally could not say and upon further prodding she clamped up and stopped replying at all.
After I put my shirt back on, I grabbed the DVD with the images on it from the technician and wished her a good day.
She replied, “Good luck.”
Slightly perturbed, I inserted the DVD in my Macbook Pro (yeah I have a 2011 MBP that still has a DVD drive — what of it?). I downloaded a trial of some software that can read the weird files that the MRI machine produces. I pored over the images of my brain, looking for asymmetries or things that looked weird. I found a bunch. I realized I was not a medical professional and had very little idea of how to find a tumor, but I knew somehow that there was something there that shouldn’t be.
Trying not to freak out, I messaged my PA on the proprietary UCSF medical portal. Our followup where she would look at the images wasn’t for a month! Shouldn’t she see them sooner? She explained I had nothing to worry about, but if it would make me feel better, I could drop off the DVD and she’d take a look right away.
So I had a TaskRabbit run my DVD over to her office the very next day (it was rather out of the way for me). And then I waited, trying not to think about it.
After some confusion locating the DVD, I received a reply on the UCSF medical portal.
My MRI showed a moderate-sized nerve sheath tumor, or acoustic neuroma.
Actually it’s called an “acoustic schwannoma” if you wanna get technical about it.
The tumor is benign and slow-growing, but causes problems as it gets bigger and impinges on surrounding nerves. My case was abnormal due to the presentation — sudden hearing loss. These tumors are normally typified by slow hearing or balance degradation (depending on whether it’s on the auditory or balance nerve).
Furthermore, if it’s impinging on my auditory nerve (which it must be), it’s odd that it caused my hearing to get worse, then allowed my hearing to recover, then it got much worse, and now it’s recovered again. Shouldn’t it just be a straight line? And why did the Prednisone help so much? As much as medical science has progressed, there are still quite a few mysteries left to unwind.
In the following weeks I met with a head & neck surgeon in Otolaryngology as well as a neurosurgeon. They explained my options:
- “Wait and see”: get another MRI in 3–6 months and see what the tumor looks like. This is really doing nothing. Prognosis: the tumor will continue growing, albeit slowly, and eventually impede on my facial nerve & brain stem and cause paralysis and (if continuing to do nothing) then death.
- Surgery: the two surgeons would tag-team the tumor to excise it from my head over the course of a grueling 6–8 hour procedure. Prognosis: most people do fine with the surgery.
- Radiation “Surgery”: at UCSF they do Gamma Knife “surgery”, where they focus many beams of gamma rays on a single point. Where each individual beam passes through you, there is no effect on your tissue, however at the point where they meet, the tissue is destroyed. Prognosis: most people do fine in the near-term with this, but the procedure is relatively new, and they haven’t had more than 10 years to observe its long-term affects. Either way, there’s something a bit dicy about purposefully bombarding your brain with radiation.
So in my naïveté, I was excited about surgery. “So after the tumor is excised, my hearing will be back to normal, right?”
Not exactly.
While excising the tumor, they are likely to sever either my auditory nerve itself, or the tiny tiny blood vessel that feeds it. The head & neck surgeon said I had about a 30% chance of retaining any hearing in my left ear, while the brain surgeon said my chances are only 10%.
OK, what about the radiation? That’s precise and avoids cutting into my head! I’ll keep my hearing with that, right?
Nope. As the tissue scars from being destroyed, it will (almost 100% certainly) destroy the blood vessel that feeds the auditory nerve. And furthermore, my tumor is bordering on “large” classification, for which radiation prognoses are much worse. And if radiation fails, the only remaining option is surgery and it becomes much more difficult now that you’ve essentially microwaved all that tissue together into one hot mess.
So surgery it is.
I’ve been trying to keep hope alive that I’ll get lucky and keep hearing in my left ear after the surgery, while at the same time (prematurely) mourning my loss of stereo hearing. I’m finally more or less at peace with it — after all, I’ve been to more shows in the past year than probably the rest of my life combined. I’ve delayed for about 7 months, as both surgeons agreed it’s not particularly important to have the surgery immediately, however it is important to have it before the tumor gets significantly bigger. The bigger the tumor, the more difficult it is to remove, and the more likely it is that other surrounding nerves will be tweaked or damaged.
So I decided to schedule my surgery for the end of Summer. Who cares about going outside and being active in Autumn, anyway? This way I can (hopefully) be recovered enough to go snowboarding by the time Winter rolls around. Meanwhile I won’t have missed out on Summer fun: swimming, surfing, hiking, etc.
September 29th. That’s when I’m having brain surgery.
I’m not looking forward to it. To say it’s weird to schedule brain surgery for yourself when you feel 100% fine is a bit of an understatement.
“Aren’t you scared? Why aren’t you freaking out?!”
Yes, and because it does me no good (respectively). But I don’t really have a lot of great options. And on the bright side, I’ll get to sleep a lot and catch up on some movies I’ve wanted to see but failed to see in the theaters. So at least there’s a silver lining.
I wish I had some sort of moral of the story to leave you with. Some philosophical lesson. Maybe there’s something here about growing old and shattering the childish notion that I’m invincible. Maybe it’s the realization that things change, and whether for better or worse, we need to learn how to roll with the punches and make the best of our situations—whatever they may be—without lamenting misfortune too much.
Maybe I’ll just leave you with a line from a classic 2pac song:
“Things change. That’s the way it is.”
Enjoy this? Want more? Read the thrilling followup: “Brain Surgery: The Aftermath”
