What follows in this three part series is a personal narrative. All of the decisions I’ve made about my health were chosen in close consultation with medical professionals. My choices are mine, and not necessarily right for anyone else even with the same diagnosis. If you have concerns about your health I encourage you to seek out a medical professional, which I’m not.
“When you hear hoof beats, think of horses – not zebras,” is a widely known version of a quote attributed to Theodore Woodward, MD, late professor at the University of Maryland School of Medicine. He said this as a means of instructing medical interns to look for the most obvious, and likely, diagnoses first. The most obvious answer to a problem is usually the one that is correct, but not always.
I’ve been thinking about this quote a lot over the last year or so, like a mantra. Think horses. It’s just a headache, you sit at your desk too much. Think horses. It’s only a little dizziness, vertigo? You don’t get enough sleep. Think horses. Your right ear is ringing, an infection? Think horses. Think horses. Think horses.
Working as close to cancer research as I do can make you a little paranoid. I try hard to stay grounded, and remember that headaches are headaches for the same reason that hoof beats normally signal horses – it is simply unlikely for a headache and a little dizziness to be a harbinger of anything more.
My symptoms were easy to downplay, but when I started to pay attention to what my body was trying to tell me, it was much more than a headache and a little dizziness. It was a piercing headache radiating from the back of my skull and wrapping around the front of my head to above my right eye. It was the additional emergence of my normal migraines with a ferocious new frequency. It was vertigo that left me feeling unmoored multiple times a day, everyday. It was diminished hearing in my right ear that left me missing whole conversations, and constantly repositioning myself so people could speak on my left. It was ringing, incessant ringing, in my right ear. Eventually, it was fatigue. I typically walk 45 minutes each way to work, and I hit the point where I dreaded having to get myself to the office.
Of course, all this did not hit at once. It built up over the course of several months while I berated myself for worrying and reminded myself to think horses. I often joked with a colleague about the rare diseases I must have, things it’s absurd to think an otherwise completely healthy, 26-year-old would have. I kept expecting things to get better, like if I made it through the winter I’d magically start feeling like myself again (because that is clearly how the world works). I didn’t.
I’m really not making it up
The real drama started in February when my hearing loss had become a serious concern. I went for a hearing test that I passed, registering in the normal range. When the doctor who gave me the results told me I was fine, I stared at her in disbelief. I tried to explain that I couldn’t hear conversations that I couldn’t make out music and lyrics when my headphones were in my right ear. I tried to explain that identifying words was different from identifying tones like in the test, but the doctor just looked at me and said, “I trust my data.” As if I’m just making it all up.
Since I passed the hearing test, I wasn’t sure what to do next. So, I spent a few more weeks with the symptoms getting worse to the point that I was having migraines everyday, and actually didn’t go to the office because I was exhausted. Then, it was my tongue. I find it almost funny that my tongue was the conclusive sign something was wrong, but it was. It was numb, and I tasted metal. The migraines had sent me to my primary care doctor in mid-March, and at this appointment after I detailed all my symptoms, she asked me, “Are you feeling anything else?”
Completely as an afterthought I added, “My tongue feels weird.”
“Numb? I guess? I’m acutely aware that I have a tongue. Does that make sense? I feel it, but only half of it. And everything tastes funny, but only funny on the right side.” (Obviously, at my most eloquent.)
To my doctor’s credit, she didn’t let her concerns show, and since she was calm I was calm. She told me later when I mentioned my tongue she knew something was seriously wrong. She recommended I go for a CT scan of my head the next day. I took that day off work, and went for the CT in the early afternoon. It was quick and painless; I left the hospital around 3pm and took a cab home.
I intended to go to work the next day since they weren’t going to find anything and all this was just to rule things out because, well, horses. I didn’t entertain the idea that my joking about rare diseases may have had merit. I called my older brother, and told him explicitly, the idea that the doctors would find something on the CT was silly, and I was going to be fine. Later that night my phone rang it was my doctor calling at 8:30pm with the CT results. It probably goes without saying that your doctor doesn’t call you personally at 8:30pm with good news.
There are four ventricles in the brain. These ventricles are hollow cavities filled with your cerebral spinal fluid (CSF) the fluid that surrounds your brain. My fourth ventricle, the one at the back of the head, was compressed, putting pressure on the flow of CSF – but the CT didn’t show what was causing the compression. My doctor told me to go to the ER immediately, because I needed an MRI. Even then, I was completely rooted in denial. My health has been my privilege, I have never had any other medical problems, and I have a clear family history. It felt silly and paranoid to think it was anything bad.
In the hospital
Since I needed to get myself to the ER, I called a friend. I don’t have any family in Boston, but my friends are incredibly supportive. When I called and said I needed a ride to the ER, the response was, “I just have to put on pants.” Another friend met us there, and we were taken back quickly. After a brief bit of confusion about why we were there (my appendix is just fine where it is, thank you) I was told I needed a consult from neurology.
In the ER that night I saw two nurses, and three doctors (or four, around 1am I got kind of fuzzy, and I don’t remember any of their names). I did a lot of touching my finger to my nose and following the light with my eyes. I cracked jokes with my friends. We discussed the upcoming nuptials of another friend and the hotly debated issue of the wedding date. I wished I had sweatpants because those gowns leave a LOT to be desired. I wondered when I would get the MRI so I could get out of there and go home.
Around 2am, I was told I was being admitted. I felt silly about it, like, I’m fine, horses and stuff, we’re just ruling things out this is not necessary. I just wanted to go to sleep. I kept getting asked if I had questions. I should have questions, shouldn’t I? I was too tired for questions. So, I just let them push me through the hospital to the neuro floor (riding a bed with wheels is a weird thing, for the record). I was incredibly concerned about the fact that I didn’t have my mouth guard to keep me from clenching my jaws, and didn’t want to sleep without it. I was assigned a room, and a nurse, and a tech. Vitals were taken for what felt like the 10th time. My friends were allowed to leave, and come back to bring me my mouth guard and a pair of sweatpants. By the time they headed home for the night, it was 3am.
My nurse woke me at 6am to get me ready for the MRI. I’m not afraid of tight spaces, and I was sleepy, so I just let them do their thing. I was back in my room by 7:30am, ordering a bagel and coffee for breakfast. My friends returned and we spent the morning hanging out as if we were anywhere but the hospital. I was texting my parents, but didn’t want them to worry since it was all a lot of fuss for nothing, so I downplayed the situation.
My primary doctor, who had ordered the CT and told me to go to the ER, came to see me that morning. It was reassuring to see a familiar face. She said they were waiting for the MRI results, and we’d know that day. Around mid-morning a group of doctors came in and asked me to go through the whole story and describe the events that had led up to me landing on their neuro ward. They said they would be back with the MRI results. My friends and I watched some mindless daytime talk shows. Then we watched the Jetsons, because daytime TV is the worst.
It was early afternoon when the doctors came back. There were five of them, ranging from medical student to the neuro attending. There was more medical history, and touching my finger to my nose. They pricked my tongue with a pin. After this, they told me the MRI results. Sitting in that hospital bed on March 19 with my friend and five doctors staring at me, I heard the words, “we found a mass.” The doctors told me that I did have a tumor, but it wasn’t a type of tumor they often see – the MRI hadn’t shown a horse, in fact, I had a zebra.
One of the medical students (a nice guy, though perhaps a tad too gleeful about this) told me I have a type of tumor most medical students only get to see in textbooks. My tumor, in the inner ear, is called a vestibular schwannoma or an acoustic neuroma (the two are interchangeable). Your cerebral nerves pass through your brain and go out into your body to control all of your various functions. My tumor was growing on the eighth cerebral nerve (compromising my hearing) and putting pressure on the seventh (the numbness in my tongue because the seventh controls your face). It was between the cerebellum and the pons areas of my brain, and pressing on my brain stem.
Your inner ear is where your vestibular system, which controls your sense of balance, is located. Vertigo, the dizziness and spinning sensations I’d been feeling, is a common symptom of vestibular dysfunction. The location of the tumor meant that in addition to ruining my hearing on the right, my vestibular system was also seriously damaged.
According to the Acoustic Neuroma Association, these tumors affect one out of every 50,000 people and are typically diagnosed between ages 30-60. Any tumor is scary, let alone a tumor near your brain that is threatening your ability to move your face, but it also has a fantastic prognosis. I was told it is typically a slow growing tumor, so I’ve probably had it for years. These tumors are highly likely to be benign, meaning it won’t spread and become lethal. I write about neuro-oncology enough to know that operable is one of the sweetest words in the English language. I’ve had to talk to and tell the stories of family members who lost their loved ones to brain tumors that couldn’t be removed. I have never been so relieved by anything in my life as my zebra, because if it had been a more common type of brain tumor, I would face a very different outcome.
Instead, there are treatment options, all of which end with a full recovery albeit with scars. For someone like me who has had headaches and vertigo symptoms for years, I may leave all this better than I’ve ever been – this tumor needed years to grow to reach 2.4cm, and I’ve been unknowingly living with these symptoms the whole time. I decided that, for me, surgery was the best option. I felt that it would give me the best chance of never having a recurrence, and would preserve my ability to move and control my face. When I went to meet with my surgeons, they retested my hearing. The results showed that my ability to hear out of my right ear was at 56% meaning that functionally I was right all along; I couldn’t hear conversations or make out words. Since the nerve damage to my hearing would not recover, I chose a translabyrinthine approach to the surgery, which cuts the eighth nerve making me deaf in my right ear. This was a heavy decision, but when I considered all the choices my parents, surgeon, and I agreed this was most likely to give me the best outcome.
I was told that the timing of the surgery would be my choice, because this type of tumor was so likely to be slow growing, so I made plans to be away later in the month. My doctors asked me, while I processed things and made plans for my upcoming absence, to make sure to tell them if anything about my condition changed, particularly with regard to the feeling in my face. Since the tumor was seriously threatening the seventh cerebral nerve, the secondary goal for the surgery to remove it was to save that nerve. It could be the difference between having half my face paralyzed, I was told, and being completely normal. I kept being assured that I had time.
A week after I was diagnosed with an acoustic neuroma, on March 26, I woke up unable to feel half of my face. On my right side, from my cheek to my chin, everything was numb.