Back in control: Wyoming boy thriving after receiving new eye procedure

Louis Jahnigen simply thought he was clumsy.

For most of his young life, the 15-year-old Wyoming High School sophomore ran into things, struggled with activities he enjoyed like catching a baseball and even found himself missing the other hand on high-fives.

It never crossed his mind that he may have a vision issue. So when his school performed a routine eye exam in April of his freshman year, he was shocked to learn he had failed the test and that his right eye had 20/100 vision.

"That was the first time I knew I had an issue," Louis said. "I guess I had been blind in my right eye for a while and I hadn't even noticed, because I never closed my left eye and looked out of it."

"I knew my vision wasn't great," he added. "But I thought I was just clumsy."

The school nurse who performed the vision test referred Jahnigen to an eye doctor in town. He went, had his eye dilated and had more tests performed. The result was that Louis had a rare eye disease that affects the structure of the cornea and results in vision loss. The disease is called keratoconus, it affects one in every 2,000 individuals, and threatens significant vision loss.

"It was really scary," Louis' mother Abby Jahnigen said. "He failed his high school vision test and we just assumed he needed glasses. So we went to the eye doctor and she just sat us down and said 'I know you don't expect to hear this, but he has this problem and it's rare, but it's treatable.' ...To go from hearing that he possibly needs glasses to he may need a cornea transplant is pretty extreme for a 15-year-old boy."

"Once we got the diagnosis, he was kind of putting the pieces together of how it was affecting his life," she added, noting that his depth perception often made basic tasks more difficult.

Coming to the Cincinnati Eye Institute

Louis was then referred to the Cincinnati Eye Institute to discuss his options. At the time, he was told he could get a cornea transplant, leave it as is with treatment, or elect to have a newer surgery that was approved by the Food and Drug Administration in 2016 and wasn't yet offered in Cincinnati.

He was presented with information about that surgery.

The minimally-invasive procedure, corneal cross-linking, which is meant to slow down the keratoconus progression by stiffening the cornea through ultraviolet light and eye drops that contain riboflavin, had been increasing in use in the United States and the eye institute was close to being ready to perform its first procedures in Cincinnati.

But at the time, the institute wasn't quite ready.

"They didn't actually have the equipment yet, so that wasn't an option," Jahnigen recalled. "They said we could drive to Pittsburgh, or we could wait a couple months until they have it (equipment)."

Then in September after many appointments with Dr. Adam Kaufman, the eye institute was ready.

"I think all of those appointments and talking through the process with him (Kaufman), it made me feel more comforted, I was definitely scared at first," Abby Jahnigen recalled.

After many conversations, Louis Jahnigen was scheduled to have the procedure done in September. Kaufman would perform two procedures on the same day, Louis and one other patient, the first two individuals to receive this surgery in Cincinnati.

The surgery lasted two hours and Louis was awake for it under eye anesthetics while listening to Metallica upon his request. After the surgery, Louis had a prescription-less contact lens put in his right eye that serves as a bandage of sorts, and days later, he was starting to heal.

"I think he did very well," said Kaufman, a leading corneal and anterior segment surgeon. "He's obviously a young person to get this done, but he was totally awake the whole time."

The surgery strengthened Jahnigen's cornea and he was fitted for some prescription glasses. The first thing he noticed after the procedure and his new glasses was a massive improvement in his school work. He was able to read the board better, his depth perception had improved and reading books have become a lot more enjoyable.

Of course, playing video games has also become much easier too. he said.

Louis enjoys playing music, especially the guitar, playing sports, and shooting bow and arrows. He's right-handed but for activities where you focus in with one eye, such as hitting a target, he would use his left eye to see even though he's right-handed. Since the cross-linking surgery, he feels like he's starting to get his life back.

"He seems more confident," Abby Jahnigen said. "...It's been a really good thing."

Having to get the surgery in another city was another daunting obstacle that was scary to consider, Abby Jahnigen said. But having the procedure come to Cincinnati eased tensions.

"We felt so lucky that they brought it here and have it in our backyard," she said.

Kaufman has since performed two more procedures and expects that number to continue to grow. The impact the surgery will have locally is massive, he said.

"It took a long time to get FDA-approved," he said, "and now that it's more easily referable, I'm hoping we'll be able to do a really good job of helping people who have keratoconus and take care of their eyes this way."

He calls the procedure, which involves removing the corneal epithelium, dropping b-vitamin riboflavin into the eye and exposing it to ultraviolet light to stiffen the cornea, a "straightforward procedure," that has proven to have positive impacts.

Last Wednesday, after all that he's endured with his eye, Louis Jahnigen passed his vision test to begin the process of a temporary permit for an Ohio driver's license he can then obtain when turns 16 in April.

"He was very excited," Abby Jahnigen said. "One step closer to freedom."

For Louis Jahnigen, after all those times spilling a cup, or bumping into a table, he feels in command of his life again. One high-five at a time.

"I've just been more in control, I feel like," he said. "I'm able to see what's going on around me."

This article originally appeared on Cincinnati Enquirer: Wyoming boy receives new eye procedure for keratoconus