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Doctors told me to take nasal spray, eye drops for symptoms. I had an egg-size brain tumor

Christine Spadafor had to keep pushing to get the true diagnosis after being dismissed by doctors. She endured 70 medical visits during the ordeal.

When Christine Spadafor started to experience strange and frightening symptoms, doctors kept dismissing her concerns. She says it took a year-and-a-half of advocating for herself and pushing for tests to finally find the cause of her health problems: an egg-size tumor in her brain. Spadafor, 67, a management consultant who lives in Cambridge, Massachusetts, shares her story with TODAY.com.

I never had a headache or a seizure, which are typical symptoms of a brain tumor.

My first symptom was having phantom smells. I was smelling things that weren’t there — like restaurant exhaust or fried steak — typically early in the morning when I was waking up. I don’t live near a restaurant, so I knew that something was wrong.

Christine Spadafor
Christine Spadafor had to wear a headdress as she recovered from brain surgery to remove a large tumor.Courtesy Christine Spadafor

I’m a former ICU nurse and after doing a little bit of research, I found olfactory hallucinations are a classic neurological symptom that can be caused by a sinus condition, Alzheimer’s disease or a brain tumor.

I went to my primary care physician and over the course of 2017, I made regular trips to her because the olfactory hallucinations were continuing in frequency, duration and intensity. Her prescription was: Use nasal spray. I thought, “That’s reasonable, I’ll start there.” When the spray didn’t work over months, she said, "Just use it more."

As the symptoms were progressing, I requested that she order an MRI. I said, “There’s something wrong with my head. When I lie down, it feels like there’s a brick pressing on my forehead.” In response, she dismissively said, “You don’t have a brain tumor” and refused to write the order for the MRI.

'I was afraid I would go blind'

During this time, my mother died. I asked myself: “Was I having these symptoms because I was grieving her loss?” But that question was answered in pretty short order when a new symptom appeared: It felt as though my right eye was on fire and going to blow out of my head. The pain was so intense I was afraid I would go blind.

I never went back to my primary care physician. She had summarily dismissed all the classic neuro symptoms for more than a year. I was just so done with all this gaslighting.

I went to an ophthalmologist and I told him, “It feels like my eye is going to explode and there’s something in my head.” And he said, “You have dry eye, so use drops four times a day.” I was dismissed again.

I sought out an ear, nose and throat doctor to get an evaluation of my sinuses, but everything was clear so he suggested I see a neurologist. When I saw the first neurologist who was available to demand an MRI of my head, his response was the same as the PCP’s. He said, “You don’t have a brain tumor.”

But finally, he wrote the order. Two days after the MRI, I was sitting at the salon getting my hair cut when my cell phone rings and it’s the neurologist. He blurts out, “You were right, you do have a brain tumor.”

The MRI showed it was the size of an egg and located in the frontal lobe, where executive functioning lives. The tumor grew so large that it started impinging on my eye.

70 medical visits

Almost a year-and-a-half after my first PCP visit, I finally had a definitive diagnosis. My first thought was, “Am I going to die? Will I ever be able to work again?”

I underwent brain surgery on April 10, 2018. The tumor turned out to be a benign meningioma.

I now celebrate two birthdays every year: April 10 and my actual birthday.

Christine Spadafor
"I'm just grateful to wake up every morning and there's so much more for me to do," Spadafor says.Courtesy Christine Spadafor

But there were eye and recovery complications. The tumor had been pressing on the back of my eye for so long that when that pressure was removed, the retina in the back of my right eye peeled off like wall paper.

I have since had five eye surgeries and procedures. In all, I’ve had about 70 medical visits from the time I had the first symptoms.

After the brain surgery, I slept 22 hours a day for two weeks. When I was able to get up and move around, I walked into the kitchen and I couldn’t remember how to make toast and coffee. That terrified me, but I refused to give in to that.

I did jigsaw puzzles and crossword puzzles — anything I could to challenge my brain. I also enrolled in a brain rehab program.

It took four years to get all of my executive functioning back. The vision in my right eye will never be the same again, but my brain is completely back and I am so grateful.

I wouldn’t take no for an answer when I was being dismissed. I had to be my own medical advocate, and it’s exhausting.

A lot of people get intimidated by their physicians. They don’t want to challenge them or they think they don’t know enough to challenge them, particularly women. I’m hoping this story might help other women not give up when you’re too tired to continue to fight for yourself. But you must continue to persist. It is your health.

This interview was edited and condensed for clarity.