In 2019, Monica Robins thought her allergies had worsened. Her eye and eyelid were often swollen when she woke and she started tearing in one eye. She eventually learned she had a brain tumor —what’s known as a sphenoid wing orbital meningioma — and had most of it removed. But it has grown back and she must undergo surgery again.
“I had my MRI in April and again everything seemed fine. But the problem was my eyes seemed to be swelling again. All the symptoms I had before came back,” Robins, a health reporter at WKYC 3News in Cleveland, told TODAY. “This time I was having pressure and pain and vision issues and it wasn’t something that happened overnight.”
A CT scan showed “significant tumor growth” that moved into her cavernous sinus, which contains the carotid artery and the nerves that control the eyes. In December she’s having minimally invasive surgery.
“I just never imagined that mine would come back as quickly as it did because typically recurrence is two to five years,” she said. “None of us know how strong we are until you’re faced with something like this. The way I look at it is I am so lucky that I’m in a place where I have access to incredible medical care and cutting-edge technology.”
Allergies lead to unusual diagnosis
In 2019 when Robins woke with a swollen eye and eyelid she and her doctor first suspected her cat was making Robins’ allergies more severe.
“Getting rid of the cat was not an option,” Robins said. “I would always put towels on my side of the bed and then obviously remove them when I go to bed. But I still was waking up with this swollen eye.”
That eye started tearing. Her eye doctor originally thought Robins had dry eyes and she started using drops. When she visited her doctor for her monthly allergy shot she asked if there was anything stronger to stop the tearing in her one eye.
“(The doctor) stopped in her tracks and she looked at me and she’s like, ‘Wait a minute, is it just one eye?’ and I said, ‘Yeah.’ She said, ‘That’s not allergies,’” Robins recalled.
At her doctor’s recommendation, Robins made an appointment with an ocular plastic surgeon, who diagnosed her with ocular Graves’ disease.
“(It) is an autoimmune thyroid disorder that has no treatment, no cure and he basically said it will likely make me blind in my left eye,” she said. “I thought (my eyelid) had collapsed because of age and I was seriously thinking I was going to get an insurance covered eyelift and I walked out of that appointment just in utter shock.”
The doctor wanted her to undergo a CT scan to confirm the diagnosis. A brain tumor could also cause such symptoms.
“I am thinking, ‘Great, I either have an untreatable thyroid disorder or I have a brain tumor,’” she said.
Robins recalled that when her father was dying, she had requested a neurological consult and doctors had found a tumor in his brain. Because his health was “far too fragile” they opted not to get a biopsy because she worried it “would likely kill him.”
“All this comes flooding back to me the Friday before my CT scan and it hit me — I knew I had a brain tumor,” she said.
After the CT scan, Robins learned she had a sphenoid wing orbital meningioma.
“This doctor is telling me I have a mass behind my left eye that is pushing my eye out of my head and I need brain surgery,” she said. “Your world stops.”
About 30% of brain tumors are meningiomas, according to the National Brain Tumor Society. These are often slow-growing tumors that start in the meninges, the layers of tissue between the skull and the brain. About 20% are sphenoid wing meningiomas, which flourish in the skull around the eyes.
“There wasn’t a lot of information about my type of tumor,” Robins said. “…The location of mine was not very common … not only was it behind my eye, it was also on my eye and in my eye socket.”
She underwent craniotomy in 2019 — which left her with a 10-inch scar — and required 51 staples and titanium plates to rebuild her head. Doctors couldn’t safely remove about four spots and Robins knew there was a chance they could spread. When the symptoms started again in 2021, she wondered if she did have ocular Graves’ disease and requested a CT scan. That’s when doctors saw how the tumor grew.
“The tumor went into my skull and was growing through my bone to the cavernous sinus,” she said.
In December she’ll undergo a TONES procedure, transorbital neuroendoscopic surgery, where the doctor will go through her eye socket to remove the tumor. They’ll have to remove some bone to get all the tumor and if it ends up being too much they’ll use her rib to reconstruct her face.
“They’ll cut along my bra line, if you will, and they’ll take bone and cartilage from that rib and they’ll use my bone to rebuild my face,” she explained.
Facing brain surgery a second time
“I am so incredibly lucky that I do what I do because I have met so many people … who’ve gone through things that are way worse than what I’m dealing with and I remember their positive outlook and their attitude and how they managed to get through things with grace and dignity even when the odds were utterly against them,” she said.
While recalling the strength of the people she’s interviewed boosts her resolve, she did have a few moments of sadness or wonder why her. Still, she feels grateful that she will undergo a cutting-edge procedure that could be used more widely to help others.
“When they told me I could have this minimally invasive surgery, I was really excited,” she said.
Robins hopes that by sharing her story people will have a better understanding of benign tumors and learn that some can present real threats to people’s health. But she also wants to offer hope.
“I have to explain to people that benign tumors, depending on where they’re located, they kill people too,” she said. “If my journey can help one person have a better perspective or think of their situation differently, that’s the reason I’m doing it.”