What's Wrong with Me?
After months of perplexing symptoms, a mom faces a life-changing diagnosis.
I was halfway through my 6 a.m. yoga class but nowhere near feeling Zen, thanks to the certainty that I was about to topple over. Following my instructor’s directions, I attempted to stand on my right leg, floating my left behind me into warrior three. I had practiced yoga for two decades and knew I could stand steadily, but over the past year every time I tried a one-legged pose, I wobbled like a willow. Get focused, I told myself. Stay upright. I tipped forward onto the mat.
Balky balance at age 52 was just one symptom of what I thought was middle agedom. For about six months I had also felt as if a cotton ball were lodged in my left ear. I couldn’t hear baristas at Starbucks or the singer at the Fitz and the Tantrums concert I dragged my husband to. Two audiology tests only showed minor hearing loss, but I had another symptom: slight dizziness. I returned to the first ENT doctor I had seen and her receptionist recommended I consult with a neurotologist, an ear and skull base surgeon, who was out of network. Medical receptionists are on the front lines of patient care, so they’re worth listening to. That neurotologist prescribed an MRI of my brain with contrasting dye.
When I didn’t get the results after a few days, I thought that no news was good news but wanted to close the loop to be sure. So, hours before heading out on a college road trip with my teenage daughter, I called the specialist’s office. As soon as the nurse asked me to hold for the doctor, my stomach lurched. “I’d like to see you today,” she said, never apologizing for not calling me, even though she had received the results days earlier. “You have an acoustic neuroma.”
As my husband drove me to the doctor’s office we were hushed and scared. We had Googled my diagnosis. Relatively rare benign tumors, acoustic neuromas are made up of cells that go rogue and multiply around your eighth cranial nerve, inhibiting its ability to send sound and balance information from your inner ear to your brain. They may be caused by a genetic mutation. “As far as brain tumors go, this is one of the best kind to have, especially if it’s small,” says Isaac Yang, MD, neurosurgeon at Ronald Reagan UCLA Medical Center and head of the UCLA Acoustic Neuroma Program. They’re slow-growing and generally not life-threatening. But because of my age and the size of my tumor, which was slightly larger than a Brazil nut, my doctor did not recommend a watching (with semiannual MRIs) and waiting (to see if it grew) approach. It couldn’t be ignored.
I had two options: radiation or surgery. Radiation would halt tumor growth but could leave me with further hearing loss and balance problems. It also carried a remote risk of cancer. While that was not a very attractive option, neurosurgery, on the other hand, involved opening my skull to remove the tumor, a stay in intensive care and side effects similar to radiation’s. What if I was radiated and got brain cancer years later? What if neurosurgery left me with total hearing loss? I tried to partition off my fears during the day but had many sleepless nights. At the time, I was the sole breadwinner for my family because my husband was unemployed. With college tuition to pay, I needed to keep my business afloat and my family safe. That meant taking care of my brain tumor and not letting fear paralyze me.
Choosing the best treatment required extensive research and networking. With a rare disorder like mine (it’s diagnosed in approximately 3,000 Americans a year), finding an expert is imperative. And, thanks to the Internet, it’s easy. I pored over the Acoustic Neuroma Association website (anausa.org), focusing on medical information and ignoring forums filled with scary tales of recurring tumors and constant headaches. I reached out to physician friends and a college buddy in the pharmaceutical industry for advice and referrals. In a health crisis, working connections can help you get more informed second opinions quickly, so I dug deep into my address book. I sent my records to four neurosurgeons who met the “lots of experience” criterion; all said that stereotactic radiosurgery with a Gamma Knife machine was my best option. (None of them charged to look at my file, even though I would have been billed for an in-person consultation.)
Ultimately, I agreed with their recommendation and chose Douglas Kondziolka, MD, professor of neurosurgery at NYU Langone Medical Center, for the outpatient procedure. At my first appointment, he explained how the machine would be programmed to hit the tumor and avoid healthy tissue, and laid out his goal of keeping my facial muscles intact. I arrived at the eerily empty hospital just before dawn. After an MRI pinpointed the size and location of my tumor, a cage was screwed into my head to immobilize it. When my forehead was numbed for the screws, I joked that the needles hurt way more than my dermatologist’s Botox-filled ones. Kondziolka laughed, which I appreciated. I was terrified as the assistants and medical physicist swarmed around me.
Then they slid me into the machine, radiation was beamed into my tumor for about 20 minutes, and it was done. The only bloodshed was four tiny dribbles at the points where the screws had been, so a nurse wound a bandage around my head. The doctor told me I could remove it during my car ride home and to schedule a follow-up in six months. Five hours after I had entered the hospital lobby, I was home. The next day I was back at my desk—though I tired easily.
Radiation can swell the tumor a little before it starts to shrink, so my symptoms worsened before getting better. Headaches were a menace. I experienced vertigo daily. Yoga classes remained tough. And I had to go to rehab, where I balanced on one foot with my eyes closed—impossible even without a tumor!—and performed eye exercises. I had ugly facial spasms for a few months but, slowly, they became much more subtle. And finally, at my most recent six-month checkup, yet another MRI showed the tumor was dying.
Life isn’t suddenly perfect: I still can’t hear the baristas, but I’ve learned to lean in and smile a lot. My warrior three isn’t always steady, but when I wobble, I accept that it’s normal. Unsteadiness in yoga is part of getting better. And, thankfully, getting better is just what I’m doing.
How to Get Diagnosed—Fast
Heed Signs Solitary symptoms may be explained away, but multiple ones usually suggest a neurological problem. Pay attention to hearing reduction on one side, fullness in the ear, ringing in the ear (tinnitus), new onset of imbalance, headaches, facial numbness or facial weakness.
Act Fast While acoustic neuromas are slow-growing, the larger the tumor, the more limited your treatment choices. As they expand, they can press into the brain.
Test Well “A contrast MRI with internal auditory canal series is the gold standard to diagnose acoustic neuroma,” says Yang. Ask for one if your doctor doesn’t prescribe it.
Go Pro “You will have many questions before and after your diagnosis,” says Kondziolka. “You need answers that only doctors who treat the majority of these cases can supply.” Seek out centers that specialize in addressing this type of tumor.