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Syosset woman outruns tumor, headed back to NYC Marathon for third time

NIcole Henn of Syosset runs trails Wednesday to

NIcole Henn of Syosset runs trails Wednesday to prepare for the New York City Marathon. Credit: Newsday/J. Conrad Williams Jr.

Nicole Henn plans to tackle the grueling New York City Marathon course Sunday for the third time.

This time, though, the Syosset woman won't be focused on how quickly she can finish the 26.2-mile run. Just making it to the starting line will mark her personal best.

Less than 14 months ago, Henn underwent surgery to remove a craniopharyngioma tumor from her brain. The noncancerous mass was wrapped within the vital stalk to the pituitary gland, sapping strength and memory from the accomplished triathlete.

By December, Henn, 51, was training for the marathon and went on a ski trip with her family.

“I don’t want this to define me — that I can’t do this,” said Henn, who sells insurance. “It’s more like, ‘Why can’t I do this?’"

She is looking forward to seeing friends at the race and hearing the roar of spectators.

“From beginning to end, it’s a cheering crowd,” Henn said. “It’s so exciting.”

Her passion has impressed Dr. Mark Eisenberg, the neurosurgeon who performed the delicate surgery that took almost eight hours to complete.

“I’m like, blown away,” said Eisenberg, director of the Skull Base Center at North Shore University Hospital in Manhasset. “When I met her, she had just finished an Ironman [triathlon]. Athleticism is a big part of her life and who she is.”

Henn was recovering from the Ironman Lake Placid in July 2018 when she started to notice something was wrong. The mom of three who had completed a 2.4-mile swim, 112-mile bike ride and 26.2-mile run suddenly couldn’t walk to the end of the street outside her home.

And there were other issues.

“I would walk into a room and not know what I was doing,” Henn recalled. “I just seemed a little foggy.”

Henn tried to brush it off, noting she had been busy helping get her twin daughters off to college. Her husband Ted, troubled by her increasing short-term memory loss, made an appointment with their primary care doctor. He ordered an MRI, and a technician delivered the crushing news.

“I was still in the parking lot when they called me and said I had a mass on my brain and they had already notified North Shore,” she remembered. “I was so freaked out — I didn’t know what to think.”

A series of tests confirmed Henn had a craniopharyngioma tumor that needed to be removed quickly. It was in a precarious position near the optic nerve, carotid arteries and hypothalamus, a part of the brain that impacts memory — all of which need to be protected and worked around carefully, Eisenberg said.

Researchers believe these tumors start as a mass of cells that are supposed to migrate to another part of the body during the embryonic stage but get trapped, Eisenberg said. They tend to develop during childhood or when people are in their 40s and 50s.

Doctors at North Shore University Hospital used an endoscope, inserted through Henn’s nasal cavity, to remove the tumor. They were able to leave the pituitary gland intact, but had to remove the stalk that distributes hormones to the body.

As a result, Henn now needs a regimen of medicine and sees an endocrinologist to adjust the doses.

She believes having a healthy lifestyle and mindset helped her get through surgery and recovery and hopes her story will inspire others to become more active.

“It doesn’t have to be races, it could be taking a bike ride or walking on a trail,” she said.

Henn will continue to see Eisenberg once a year for an MRI to make sure the tumor has not returned.

She credited the neurosurgeon for his kindness and patience, answering her seemingly endless stream of questions and concerns.

“I cannot believe the amount of time he spent with us,” Ted Henn added.

And Eisenberg is proudly watching his patient's impressive recovery and marathon training.

“For her to be able to get back to doing it at that level, I think, is just tremendous,” he said.

Henn’s competitive drive, which once allowed her to master the marathon in just over four hours, is still there.

“My goal is to finish, which I will do if I have to crawl on my hands and knees,” Henn said with a laugh. “And I don’t want to come in last.”