Jurriën timber They found a large mass in my brain. That was the text message my husband, Steven, sent from the hospital. I kept rereading it, hoping I got it wrong, but I hadn’t. For weeks he had been complaining of feeling dizzy, and said it was getting worse. He’d also lost hearing in one ear. He had mentioned that he would go to the emergency room if the dizziness hadn’t improved by morning. This wasn’t the first (or second or third) time he went to the hospital due to dizziness, so I wasn’t expecting much to come of it.
Each time he went there were no real answers. Some medical staff blamed stress or anxiety for the dizziness. A few primary care doctors—and even an ENT—didn’t order any further testing. They dismissed his symptoms every single time—for decades. This was the first time we got a real answer, and we were both shocked. Sometimes, when you’ve been gaslit into believing your symptoms have no real cause, you start to believe it.
It can be challenging to get an accurate diagnosis with common, often benign, symptoms. “The problem is that [dizziness and uneven hearing loss] are so common, doctors are sometimes too quick to attribute them to anxiety or stress, Hamid Djalilian, MD, professor of otolaryngology, neurosurgery, and biomedical engineering at the University of California, tells SELF. “While doctors are pretty good about working up fainting, they can drop the ball when it comes to asymmetric hearing loss or chronic vertigo,” he says. “For this reason, if you feel something is off but you feel dismissed, one of the best things you can do is to secure a consultation with a specialist.”
My husband underwent surgery to remove as much of the four-centimeter tumor as possible. But, as Dr. Djalilian points out, tumor size can increase surgery risks. “The main issue we are concerned about in surgery is to preserve critical functions like the nerve that controls facial movement or hearing. Large tumors can increase surgical complexity,” he says. Unfortunately, because it was so big, that surgery had life altering results: left-sided paralysis in his face and throat.
A lab analysis confirmed some good news, though: It wasn’t cancer. It was an acoustic neuroma—a type of “usually slow-growing tumor that develops from the balance and hearing nerves supplying the inner ear,” according to the National Institute on Deafness and Other Communication Disorders.
A simple CT scan would have potentially caught the mass before it had grown so large. Surgery would have been easier if done before the tumor grew, and likely wouldn’t have caused the paralysis my husband deals with now. We sometimes reminisce about the years and years of symptoms. We estimate that the tumor started at age 17—it was finally diagnosed at 51.
Now we warn others of the signs of an acoustic neuroma. If you or someone you know has the following symptoms, it may be time to advocate for a CT scan:
Dizziness accompanied by double vision, slurred speech, weakness, coordination issues, or new severe headachesDizziness that is worsening and does not improve with time or treatmentDizziness with unexplained hearing loss or tinnitus, particularly when symptoms are one sidedThe symptoms we (and the medical professionals) didn’t connect were dizziness with migraines, balance problems, and complete hearing loss in the left ear. When put together it makes sense that something bigger than stress was wrong, but it’s hard to see the big picture when you’re in it.
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