Thomas Smith: Acoustic Neuroma

In December of 2008 I went for a hearing test. My wife had been urging me to get my hearing checked as I seemed to be having a harder time hearing at crowded restaurants and noisy parties. I noticed that I also was favoring my right ear as far as using the telephone. And I really can’t remember how long I had been doing that—favoring my bad ear and hiding and denying that there could be any problem. Before scheduling the test, I reflected on my life up until this moment. Was I losing my hearing in my left ear from all those years of playing in excruciatingly loud rock bands in tiny clubs, going to painfully loud concerts, and/or using power tools without hearing protection? I began to believe that this was a classic example of “chickens coming home to roost.”

After the test the otolaryngologist (ear, nose, and throat doctor) was concerned that the hearing in my left ear was noticeably diminished compared to that of my right ear. He immediately prescribed steroids, thinking I had some sort of fluid buildup. He also ordered a head MRI “just to rule something out” which I scheduled for the following Thursday morning. After enduring the MRI, I received a phone call from the otolaryngologist in the early afternoon telling me that I had an “acoustic neuroma.” So much for ruling something out. I remember his voice quivering a bit, as delivering this news was harder for him than it was for me to hear it. And indeed, I was more mystified than I was frightened at that moment. The doctor knew what he was talking about. At this moment I knew nothing. What was this thing? How did I not know that I had it? Was it going to kill me? What am I going to do? Will I be able to continue to play, no, even just listen to music again?

An acoustic neuroma (or, as the medical community insists on calling it, a vestibular schwannoma—exact same thing) is a benign tumor that forms and grows on the eighth cranial nerve. I personally have a hard time labeling it “benign” when it robbed me of my hearing in my left ear, so I prefer the term non-malignant. Everyone has two sets of twelve cranial nerves. The eighth nerve, on each side of the brain, carries aural information from the cochlea in the inner ear to the brain. This nerve also performs a dual role in that it relays “vestibular” (balance and equilibrium) information from the ear to the brain. Classic symptoms of having an acoustic neuroma (AN) include diminished hearing in the affected ear, tinnitus (ringing in the ear), and balance problems. I checked the boxes for diminished hearing and tinnitus, but strangely had no balance problems, none that were overt anyway. My neurosurgeon told me that due to its size, I had probably been walking around with it for at least twenty years, thereby slowly normalizing my vestibular system to it.

With the improvements in MRI scanning technology over the last twenty years, acoustic neuromas as small as two or three millimeters could now be detected. Mine was a lot easier to see: three centimeters, or if your metric conversion skills are not great, about 1¼ inches in diameter—about the size of a walnut. At this point in time no one knows how or why some people develop ANs. Since it doesn’t kill you like cancer does, money and research into the possible causes have not been forthcoming. 

I now was faced with learning what kind of treatment was available and deciding how I should proceed. The good news for me was that in the Philadelphia area, there are two hospitals that specialize in treating ANs: Hospital of the University of Pennsylvania, and Jefferson Hospital. There are three possible treatments routes for ANs, and each one has its share of alternate avenues and less frequented side roads. The first and least invasive is “watch and wait.” If the tumor is small and the patient is not suffering from debilitating symptoms, MRIs every six to twelve months determine whether or not the tumor is growing and at what pace. If there is growth, then one might move on to a more active treatment or continue doing the same observation routine. Radiation is the second option, and like prostate cancer treatment, there have been advancements in the technology and treatment outcomes. The third option is surgery, where all or most of the tumor is manually removed.

Since my tumor was too large for radiation, and watching and waiting at this point didn’t seem sensible, surgery was practically decided for me. But I was eager to get this thing out and resume my life, however different my life was going to be. So on July 13, 2009, I underwent ten hours of surgery and spent five days in the hospital recovering. 

I needed five or six weeks before I felt like playing again. Some of this recuperation was physical and some of it was psychological; I just needed more time to recover before I felt like playing was important again. When I did feel like playing again, I started with short sessions, as fatigue was a lingering issue from my surgery (and the anesthesia probably had something to do with it also). I slowly rebuilt my stamina and assumed normal amounts of practice time. After approximately six to eight weeks I was starting to feel like I could make it through a pre-surgery, normal day’s activities. 

It was helpful to get back to my usual routine little by little, and to return to normalcy, or what would now be my “new normal.” Vestibular therapy strengthened my abruptly compromised balance system. Also, I had always had a casual interest in tai chi, and had heard good things about its fostering of the mind-body connection and its balance-strengthening movements, so I enrolled in a local class and attended, off and on, for three years or so.

As far as how my hearing was affected, I could now hear out of one ear only, but there was no difference in the quality of the sound I heard. The tumor had rendered my affected ear so weak that I didn’t notice any great difference after surgery. My biggest concession to the surgery and single-sided hearing involved ensemble playing. Since I don’t play an orchestral instrument and am not assigned a seat, I could situate myself so that any other ensemble partners would be on my “good” side. The one exception to this was when I played in a guitar orchestra (of about fifteen or sixteen players) in which most of its members were on my bad side. That was a difficult situation in terms of hearing the entire ensemble.

In my daily life, noise really bothers me now. From sirens and loud construction sounds, to boisterous parties—it all psychologically tires me out and, at times, makes me anxious. As in, “I’ve got one good ear left. I better take care of it and not expose it to anything excessive or harsh.” Crowded, noisy restaurants are a challenge for me and I can only spend so much time in the particularly noisy ones. But despite the challenges, the ability to still hear well in my good ear makes me stop and just express gratitude to my doctors, loved ones, and myself practically every day. 

Throughout my recovery the Acoustic Neuroma Association turned out to be extremely helpful both in supplying reliable, detailed information, and in being a place to connect with other individuals who have experienced or were experiencing ANs. In fact, I was so impressed with the ANA’s mission that I volunteered as a support group leader in the Philadelphia area for eight years.

For anyone out there going through the process of recovery, I would say patience, patience, patience. You’re stronger than you think you are.

You can learn more about Thomas at www.thomasmithmusic.com