When My Rare Diagnosis Didn't Fully Explain My Symptoms

I have a benign brain tumor which is called an acoustic neuroma, or vestibular schwannoma if you want to be fancy. It’s a rare tumor. One person in 100,000 will be diagnosed with an acoustic neuroma in any given year. Picture the biggest college football stadium in the U.S. See all those people? Just one will be the unlucky one diagnosed with an acoustic neuroma.

It was 2010 when I was diagnosed and I was 33 years old. I had been so sick — incredibly fatigued, lightheaded with painful headaches and pressure in my head — that I was happy to have found a reason for my suffering. The only problem is that while we found something that definitely needed treatment, the tumor was not making me sick.

Then neurosurgeons told me that my symptoms were not caused by the acoustic neuroma. They said the only symptoms usually caused by an acoustic neuroma are loss of hearing and dizziness. Wanting to believe we had discovered the problem, I told myself that my lightheadedness must have actually been dizziness and that my headaches weren’t so bad. I so badly wanted to focus on living my life — raising my young family and advancing my career — that I stopped questioning why I was sick and denied how I really felt.

What I wish I’d known then is that if your rare disease doesn’t explain your symptoms, there is probably something else going on. It wasn’t until six years after the diagnosis of my brain tumor that I realized there might be another explanation for my symptoms. For Christmas 2016, my parents gave me a Fitbit, and I soon noticed that my heart rate was often accelerated. I engaged in some internet research and began my long path to a diagnosis with postural orthostatic tachycardia syndrome (POTS).

I wish I had not spent so many years believing the brain tumor was my only medical condition. I wonder how my life and career would have played out if I kept pushing for an accurate diagnosis instead of pretending that nothing was wrong. The moral of the story is: if your symptoms haven’t been explained, keep looking. You owe it to yourself.