Maryjane Behforouz lived in a deafening nightmare for over a year.
The 48-year-old woman from the Indianapolis area dealt with more than a year of hearing loss, tinnitus, but most aggravating, a loud clicking and crunching sound in her ear.
It all began in July of 2015. Behforouz felt a tickle in her ear that she assumed was water from swimming or leftover from a cold she was getting over.
In order to scratch the itch, Behforouz covered the opening of her ear with her fingertip then quickly pressed on the area several times to try to coax the water out. Almost immediately, she noticed a decrease in her hearing.
After 10 days passed and she still hadn’t recovered her hearing, Maryjane consulted an ENT.
He was stumped by the fact that a nasal spray and antibiotics were ineffective, so he sent her to a colleague with a more specialized practice.
The second ENT diagnosed her with nerve damage in her ear and said it was possibly Meniere’s disease or an autoimmune disease. They treated her by injecting her ear with steroids.
The treatment was painful and ineffective. After the steroid injections, she developed tinnitus (ringing in the ear) as well as loud clicking noises.
As annoying as the tinnitus was, it was manageable. But for Maryjane, the clicking noises were “literally driving [her] crazy”.
She sought out a third opinion at a teaching hospital, but the ENT there didn’t have any new ideas of what it could be.
Feeling hopeless, Behforouz turned to the internet which had proved helpful in her quest to treat other medical issues several years earlier.
It was online that she discovered Konstantina Stankovic, an associate professor of otolaryngology at Harvard Medical School. Stankovic had a medical degree from Harvard as well a doctorate in auditory neuroscience from MIT.
With credentials like that, Maryjane felt like she might have a chance at solving her mystery with Dr. Stankovic. She booked an appointment.
Maryjane recounted the entire tale, beginning with the itchy feeling in her ear.
Dr. Stankovic listened intently.
“It was her story that really told me what it probably was. You really have to listen to a patient’s story to even think of it.”
Based on Behforouz’s story, Stankovic did not think her hearing loss was caused by nerve damage. Instead she thought there was a fracture in a small, delicate bone in Behforouz’s middle ear — the malleus.
Hearing loss caused by a bone fracture is very different from nerve-related hearing loss. And the best part? It can usually be fixed by surgery.
Behforouz trusted Stankovic.
“She really listened to my story, and her history was much more thorough. [It was] a very different experience.”
So Maryjane opted to do the surgery.
In the short, hour-long operation, Stankovic found out that she was only wrong about one thing. The fractured bone was an even smaller bone called the incus.
Maryjane immediately stopped hearing the clicking in her ear.
She still has to deal with tinnitus and hearing loss, but the clicking had been the most exhausting symptom for her to deal with. Behforouz was also relieved to know that she doesn’t have an autoimmune disease as the second ENT had suggested.
Regarding solving Behforouz’s medical mystery, Stankovic said,
“I think this is very diagnosable…
“You just have to be thinking about it. The important thing is you really have to listen to a patient.”
People on Twitter applauded Stankovic for actually listening to her patient.
Diagnosis requires thorough history/listening. Why cutting patient/doctor “story-telling” time is bad for patients. https://t.co/EukH7RbSme
— Twila Brase (@twilabrase) August 20, 2018
Stories like this are why patients flock to the internet for answers. If we don't have a strong answer, say “I don't know.” Better yet, try to suggest someone who might. https://t.co/PINE7303EG
— DrTwillett (@drtwillett) August 19, 2018
Another person felt that Behforouz also deserved credit for acting as her own advocate and not settling for incorrect diagnoses.
Very interesting read, and a testament to patients advocating and researching for themselves https://t.co/48L2FCezNu
— Maureen Barlow (@pixelgem) August 19, 2018
But mostly, Twitter was fascinated by the resolution of the mystery.
— Laurie Luckritz (@LaurieLuckritz) August 21, 2018
— Taeed Quddusi (@taeedquddusi) August 21, 2018
“Indiana woman had a loud, nonstop crunching noise in her head that doctors couldn’t quiet”
Glad she figured it out-lucky 4 her she has $-now she has so many pre-existing conditions her insurance will get denied/cost a fortune. Most don’t get this help. https://t.co/YyK2FVtMey
— Liz BeyBey (@liz_beybey) August 21, 2018
What a story… It’s still shocking to hear how many people are misdiagnosed by “experts”, but also amazing how far medical treatments have come!
“woman had a loud, nonstop clicking — sometimes crunching — noise in her head that doctors couldn’t quiet” https://t.co/JWFQA9riIm
— Goh Hirose (@GohHirose) August 20, 2018
I thought it was gonna be a bug. I REALLY thought it was gonna be a bug ! I was tensed up and ready to read about a disgusting bug, crunching her brain. The real answer is more interesting, though! https://t.co/XbT30nbPDq
— Karin Lynn Bates (@karinlynnbates) August 19, 2018
Fascinating! Broken incus! https://t.co/8eUtfy9oYI
— Dr Mike Nitabach (@mnitabach) August 19, 2018
Doctors, be sure to listen to your patients. And patients, don’t be afraid to seek a second (or fourth) opinion!