It’s Time to Take Control of Your Own Healthcare

Misdiagnosis after Misdiagnosis

Ever try to google your symptoms to figure out what’s wrong with you? I think we all have at some point. Is it a cold? A virus? Cancer? We’re normally left with a long list of potential illnesses or conditions we might have. So, eventually we go to the doctor and the educated expert informs us of our real diagnosis.

Well, this is quite the opposite story of Maryjane Behforouz. The 48-year-old living in Indiana went to three different specialists to try to figure out why one of her ears was making a constant clicking noise. The noise was extremely loud and it bothered her day and night. But it seemed as if no doctor, diet, injection, or acupuncture treatment made any real difference.

The start

It started in 2015 when she felt something strange deep in her ear. She figured it was just residual water. But as time passed she started to notice hearing loss in that ear.

She was told by three ENTs she had nerve damage, possibly an autoimmune condition, or maybe an inner ear disorder called Meniere’s disease. However, Behforouz had no family history of any ear condition and was missing symptoms that are typical for Meniere’s. Nonetheless, she took the prescribed steroid injections.

Things only got worse. She had to do something.

So, she turned to Google to try to find something or someone who could help her.

The internet as a resource

This wasn’t the first time she’d done that. In 2007 it’s how she found out she had the BRCA1 gene mutation. The mutation increases women’s risk of developing breast cancer and ovarian cancer.

“An estimated 72 percent of women with the mutation will develop breast cancer by age 80 (compared with 12 per cent of average-risk women) and 44 per cent will develop ovarian cancer (compared with 1 per cent.)”

After extensive research, Behforouz decided to have a double mastectomy and a total hysterectomy as means to prevent the cancer. It was a radical decision, but Behforouz trusted herself, her doctors, and the research she’d done and she knew that the choice was the right one for her. Unfortunately, that choice never would have been possible had she not done so much research on her own about her options.

Going through a similar pattern of research for her ear, Behforouz found Doctor Konstantina Stankovic, a Harvard and MIT graduate who she thought may be able to help her. So, she called her office, made an appointment, and traveled to Boston to see what she could do.

Meeting with Stankovic

“It was her story that really told me what it probably was,” Stankovic said. “You really have to listen to a patient’s story to even think of it.”

Radical right? Listening to the patient helps you better serve them.

Stankovic found that Behforouz didn’t have nerve damage. She had a Malleus Fracture. She’d been misdiagnosed.

Luckily for Behforouz, Malleus fractures can sometimes be fixed surgically. Behforouz opted to try it.

Another surprise

Turns out, it wasn’t the malleus bone at all but the incus which was fractured. But the fracture could be fixed during the same surgery and it was successful!

Moral of the story is, if Behforouz had REALLY been listened to in the beginning, her problem may have been solved much faster. And, if Behforouz hadn’t taken control of researching her options with the BRCA1 gene herself, she wouldn’t have been able to make the decision she did. It’s far too easy for healthcare professionals to become to methodological in their work. They rely and operate around on their knowledge of the norm instead of truly thinking about each patient as an individual with a unique history and a unique story.

Yes, there needs to be change at the institutional level. But until then, don’t forget you can stand up for yourself and take control of your own health.

Read Behforouz’s story in full here.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email