A Doctor Told Me the Whooshing in My Ear Would Just Go Away. I Actually Had a Brain Tumor

“I was told to use Flonase.”

August 14, 2024

claire burnight in a hospital gown receiving brain tumor diagnosis

When Claire Burnight, 24, started hearing a whooshing sound in her right ear, she made an appointment with an ENT doctor—but they didn’t think much of it. Given that she’s young, active, and generally healthy, the chances of it being a sign of anything serious were low. But a couple months later, an MRI revealed that she actually has a rare brain tumor, and not long after further testing revealed a vascular condition—a pair of diagnoses that would throw her life plan for a loop. Here’s her story, as told to senior health writer Erica Sloan.

About six months ago, I was lying in bed with my boyfriend one night, when all of a sudden I started hearing this pulsing sound in my right ear. I have a stethoscope because I was previously an EMT, and I had him hold it up to my ear and try to hear it too, but he couldn’t. Ever since then, I’ve heard this constant whooshing sound.

I thought it was weird at the time, so I made an appointment with an ear, nose, and throat doctor, and went in that same week. They did a general hearing check, and that was fine—so they brushed me off and didn’t ask any questions. Instead, I was diagnosed with eustachian tube dysfunction, which is when the tubes that connect your ears to your throat become blocked. I was told to use Flonase, and that the pulsing sound would go away soon. I was relieved—but then it didn’t go away.

I was actually supposed to attend medical school starting this summer, so I always research the heck out of things. I had been googling all the potential causes of pulsatile tinnitus, the term for a rhythmic or whooshing sound in your ear that typically syncs up with your heartbeat (like mine does). I just wasn’t convinced that what I had was eustachian tube dysfunction. And because of the knowledge I have about medical topics, I had a few ideas of what it could possibly be instead. I couldn’t shake the feeling that I needed to get more clarity from a doctor.

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About four months after that first appointment, in May, I saw a different ENT doctor and told them about the whooshing sound, which was still only happening in my right ear. They immediately said, “You need to get an MRI of your brain and neck.” In that moment, I knew in my gut something was wrong. I was pretty terrified in the week leading up to it and as I waited for the results.

I was at dinner with my brother when I got a call from the doctor three days after I had the MRI. By the tone of their voice, I could tell right away that they found something. “There appears to be a lesion in your brain…a tumor,” they told me. I was truly in shock. I just did not even know how to process it.

The only other symptoms that I’ve had are a little bit of dizziness and balance issues, which started at roughly the same time as the whooshing sound. When I’m wearing heels, I’ll catch myself stumbling. Sometimes my vision is almost like I’m watching a shaky home video that was recorded on an old VHS tape. But it isn’t anything that really impedes my day-to-day life. It took me a couple months to fully process the diagnosis.

The doctor told me I have an acoustic neuroma, a noncancerous tumor that grows on the vestibular nerve of the brain, which controls balance and hearing. So I made an appointment with a specialist known for treating this kind of tumor. The interesting thing? The pulsing was (and still is) happening in my right ear, but the acoustic neuroma is on the left side of my brain. That was a mystery to my doctors for a while.

Then in early July, I got an MRV and an MRA, which are basically MRIs of your veins and arteries, respectively; those tests discovered that I also have a condition called jugular bulb diverticulum, which means that I have a congenital defect in the temporal bone of my skull. That bone is super thin, so it’s causing my jugular veins in my head to bulge, and they’re pushing on my inner ears.

That means the tumor was likely an incidental finding, my doctors said. (The whooshing sound is probably caused by my vein abnormality, they told me, since it’s happening in my right ear.) But my dizziness isn’t that severe and I don’t have any hearing loss, so I don’t think I would’ve even gone to the doctor and discovered my tumor had I not heard the whooshing.

Initially, they were going to jump right into surgery to remove my tumor. But in a small percentage of acoustic neuroma cases, the tumor stops growing. And because the surgery is inherently very risky and my symptoms aren’t bad currently, my doctors think that taking it right out could potentially do more harm than good. Due to the current size of my tumor, I was told I have a 30% chance of going deaf from the surgery because they have to remove it from the nerve that controls hearing. I would also have to relearn how to balance and walk, and there’s a risk of facial paralysis.

Because of my age, radiation and chemo would not be good options. (My doctors also believe the tumor is benign, based on its location and shape.) So we’re going to wait six months to see how fast it’s growing and then decide about the surgery. I’m also waiting to learn whether I’ll need surgery on both sides of my head for the vein abnormality. (This condition can also cause hearing loss, vertigo, and facial weakness in some cases.) According to my doctors, it depends on whether the sound in my ear gets worse (or if I start to hear it in the other ear), or if I start struggling to hear.

Because of the uncertainty of both conditions, I decided to defer medical school. It was a really hard decision to come to because it’s been a dream of mine to become a doctor since I was 10 years old, and getting into medical school was the culmination of years of superhard work. But I’m so grateful that I was able to defer—that my dream is just on hold. It’s not that I won’t do it, it’s just that I’ll have to wait a year and that’s okay. I’ve definitely had to do a lot of processing.

It’s tough to even put my story into words because I feel everything. And I’ve been trying to allow myself to feel everything—all the ups and downs, the good and the bad. I also know now that this is just a part of my path. From the experiences I’ve already had, I know that this will make me a more empathetic, compassionate doctor who has walked the walk. It’s going to inform my practice and how I treat patients. And I really think that is invaluable.