April 3, 2012 -- Gruen von Behrens's first surgery took 13 hours when he was 17 years old. Two years later, maxillofacial surgeons transplanted bone from his back to his face to give him a mandible. The transplant lasted two days before his body rejected it.
Now 34, Behrens is cancer-free, but he has no teeth, has a hard time eating and speaking, and his face is disfigured.
He began chewing tobacco at the age of 13, a common practice in the rural farming community in Illinois where Behrens grew up. As a teenager, he thought about "baseball, food, and women, in that order," he recalled in a DrBicuspid.com interview. "Everybody used tobacco; they really didn't think it would hurt us if your grandfather or uncle was using it."
But after developing squamous cell carcinoma in his lymph nodes, surgeons removed half his tongue and neck muscles. Still, von Behrens feels lucky to be alive.
"Eighty percent of the people with that diagnosis die within five years of surgery," he notes.
Last month von Behrens testified at a Maryland legislative hearing, urging lawmakers to increase the tobacco tax on cigars and smokeless tobacco to 70%, the same level as the tax rate on cigarettes.
"Tobacco is tobacco is tobacco, and I believe having a lower tax on some tobaccos and a higher tax on the smoking tobaccos -- that's basically saying this is a safe alternative when it is not," von Behrens said.
In 2010, he testified before a U.S. Senate hearing about the dangers of tobacco in professional sports.
White spot lesion
Three years after von Behrens began chewing tobacco, he noticed a white spot on the side of his tongue where he kept it.
"After passing the tobacco with my tongue, it became raw and it hurt at first but then it became kind of tough, and I started to see white spots," he recalled. "I was terrified."
von Behrens kept it secret from his mother because she had warned him about the dangers of chewing tobacco.
"I kept telling her it was my wisdom teeth that was making my speech slurred and making me drool on myself," he recalled.
When von Behrens went in to get his primary molars removed, he knew what the maxillofacial surgeon's diagnosis would be.
"I told him I had cancer before he put the gas mask on me," he said. "I was scared to death of what they were going to do to me. I was afraid of needles, let alone having surgery done."
von Behrens said his mother's anguish was the worst part. "I've never seen my mother cry like that before, and the pain that it inflicted on her hurt me more than the surgeries," he said.
To date, von Behrens has had 34 surgeries and was a college sophomore when radiation treatments burned his face and forced him to have all his teeth removed.
He now serves as a spokesman for Oral Health America's National Spit Tobacco program and travels to schools around the U.S. to warn young people about the dangers of smokeless tobacco.
"I want kids to have a fair shot with their lives and know what the effect of tobacco use is," von Behrens explained. "If I had known then what I know now, I never would have put a dip in my mouth."
He says he has traveled to 46 states and spoken to 3 million children.
"I know how to talk to kids and relate to them, and I think that has even more of an impact than my face," von Behrens observed. "My face is an attention-getter for the first five rows, but for the rest it's my story that captivates them."
He also addresses health organizations and health departments, often at the request of dentists.
Cosmetic surgery costly
He would like to have plastic surgery and was heartened by the recent story of a man who had a total face transplant.
"Oh man, that would be my dream, but I just can't afford to do that," von Behrens said.
Maxillofacial surgeons would have to replace his mandible before a face transplant could be done, he noted. von Behrens cannot wear dentures because after surgeons reconstructed his face in the last surgery, they removed his mandible and replaced it with fibula bone from his leg. They also used pectoral muscles from his chest to recreate the floor of his mouth.
Implants would require drilling into the fibula bone that now serves as a replacement for his mandible.
Today von Behrens lives in central Illinois with his wife and two young daughters. "I met an angel," he said of his wife. "It's amazing she picked me in spite of the way I look."
He also works with the National Spit Tobacco Education Program to correct the false belief that smokeless tobacco is a safe alternative to smoking.
"Spit tobacco seemed harmless, but it has ruined my life," von Behrens said.