Tony Konen was in eighth grade when he began experiencing perplexing headaches.
“My eye would twitch and start to water and then it would hurt like I was getting poked in the back of the eye,” said the Hartland resident, now 18. The sharp pain was brief but often hit multiple times a day. Sometimes Tony saw jagged shapes in front of his eyes or temporarily lost vision in his left eye, seeing only dark shadows.
The symptoms continued into high school, but during his junior year his headaches grew much worse. Although Tony appeared to be a healthy teenager, he was often sidelined by pain, which limited his ability to concentrate on schoolwork and to participate in his favorite sports, track and football. Tony had been seeing a neurologist, but as his pain intensified, his mom, Julie, made an appointment for him at the Froedtert & the Medical College of Wisconsin Neurosciences Center to see Fallon Schloemer, DO, neurologist, headache specialist and MCW faculty member.
When they first met in the spring of 2017, Dr. Schloemer took a detailed history of Tony’s headaches and carefully considered his symptoms. She diagnosed him with a rare condition that falls under the umbrella of headache disorders called trigeminal autonomic cephalalgias. As part of his workup, Tony had a CT angiogram, a diagnostic tool designed to check blood vessels in the head and neck. It showed that those blood vessels were healthy, but it also revealed a thickness in the optic nerve behind his left eye.
Dr. Schloemer called Tony’s mom on a Sunday evening to explain that in addition to a rare headache disorder, Tony also had a mass on his optic nerve. She said the mass was likely a tumor and she had already discussed Tony’s case with and referred him to see neuro-oncologist and MCW faculty member Jennifer Connelly, MD. When Tony’s mom told him the news, his reaction included a touch of relief.
“At least I know I’m not crazy,” he said. There was a reason for that pain.
A ‘Watch and Wait’ Plan for Treatment
Dr. Schloemer ordered an MRI with contrast dye for a closer look at the tumor on Tony’s optic nerve. A few days later, Tony and his parents, Julie and Jerry, sat in the office of Dr. Connelly, who reviewed the MRI and explained that the tumor was an optic nerve glioma, a slow-growing brain tumor.
The family was pleased that Dr. Connelly had presented Tony’s case to the brain tumor board, a weekly meeting of surgeons, radiation oncologists, neuro-oncologists and others who specialize in the treatment of brain tumors. The group looked at Tony’s images and discussed a comprehensive treatment plan.
“Everyone agreed that this was a tumor we should observe closely, with no surgery, radiation therapy or chemotherapy needed right now,” Dr. Connelly said.
Tony and his parents found this collaboration reassuring. “I appreciate the team approach and knowing that a group of experts is looking at all the options,” Jerry said.
The next step was to rule out the possibility of an underlying disease. When a young person is diagnosed with an optic nerve glioma, it can signal a condition known as neurofibromatosis, a genetic disorder that triggers the growth of tumors on nerve tissue. Dr. Connelly referred Tony to the Froedtert & MCW Genetic Counseling Program, where he received blood tests and counseling and learned that he did not carry the gene mutations that trigger neurofibromatosis.
With that settled, Tony’s medical team agreed he would need scans and check-ups every few months to watch for signs that the tumor had grown.
“Our goal is to stay one step ahead of this tumor,” Dr. Connelly said. “If we need to intervene, we want to do it at a time when we have the best chance of preserving Tony’s vision.”
Now, Tony has an MRI every four months. The MRI is reviewed by Dr. Connelly and neuro-ophthalmologist and MCW faculty member Ryan Walsh, MD, who also tests Tony’s vision and dilates his pupils regularly to check for changes.
Dr. Walsh explained the optic nerve is similar to the cable at the back of a TV. “I often talk about the optic nerve being our vision cable,” he said. “It’s the main cable at the back of the eye, bringing vision from our eye to our brain.”
It made sense to the Konen family that a tumor with the ability to damage the delicate fibers in the optic nerve would distort Tony’s vision. Dr. Walsh asked Tony to report any new changes in his vision, which could indicate tumor growth.
Meanwhile, Dr. Schloemer continues to work with Tony to manage his headache symptoms. She prescribed a medication known as lamotrigine to help prevent his headaches. Originally developed as an anti-seizure drug, lamotrigine appears to help migraines by acting on neurotransmitters in the brain, presumably decreasing neuronal hyper-excitability and calming down those irritable pathways, Dr. Schloemer said.
Tony said he still gets headaches, but they’re much less frequent. “He is doing great,” Dr. Schloemer said. “It’s nice to see how much brighter and happier he is now that he’s feeling better.”
Expert Care With Kindness
Tony and his parents appreciate the way his medical team worked to understand his complex symptoms, define his diagnosis and team up to develop a tailored treatment plan. They respect the multidisciplinary, comprehensive approach and the commitment to academic medicine. Most of all, they have been wowed by the kindness of Tony’s physicians. Their compassionate approach was especially evident the first time the family met with Dr. Connelly to discuss Tony’s tumor and treatment.
“Dr. Connelly understood that Tony was more than his diagnosis; he was a young adult about to begin his senior year in high school,” Julie said. “She made a point of asking about his academic goals, which was touchy for Tony. He did not love school, and his grades had suffered as he struggled with the headaches.”
But Dr. Connelly urged him to look ahead to the future and to make high school graduation a priority. Each time he returned for an appointment, she asked him specific questions about his classes and grades.
“We had a lot of conversations about life,” Dr. Connelly said. She encouraged him to think beyond paychecks and to imagine a career that would feel fulfilling long term. With Tony’s headaches improving, schoolwork grew a little easier. He teamed up with supportive teachers and friends to complete his assignments, and on June 2, 2018, he graduated with his class.
“It felt really good to be able to walk across that stage,” Tony said. He’s currently working in construction and considering next steps, which might include training as an electrician or mechanic.
Dr. Connelly loved Tony’s graduation photos. “The look on his face and his family’s faces, their smiles, gives me goose bumps to this day,” she said. “This is why we do what we do.”
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