For Michael Niemann, singing was like breathing. But when a devastating diagnosis crippled his vocal cords, the 41-year-old former New York City opera singer turned to an experimental treatment.
In 2007, Niemann was diagnosed with a rare disease called papillomatosis, recurring benign growths in the voice box, which made it impossible to sing and nearly impossible to speak.
"I was always 'well, I am a singer,' it is kind of how I define myself -- I am a musician," Niemann said, whose mother is also an opera singer.
Niemann's wife, Carolyn, called singing a "very spiritual thing" for her husband, who now works as an airline pilot, but still regularly sings as a cantor, as well.
"Music is something that has always had deep meaning to him, whether others were listening to him or not," she said.
Specialist after specialist told Niemann his singing career was over.
"I started losing hope after talking to other specialists across the country and pretty much getting the sense from them that this was a pretty tragic thing to happen to a singer because, 'guess what, you're not going to sing again. We'll get you fixed up so you can speak and function again in life – but to be an opera singer, or to sing on that level – it ain't going to happen with this condition,'" Niemann said.
Then Niemann walked into the office of Dr. Steven Zeitels, who has saved some of the world's most famous voices, including Julie Andrews and Steven Tyler.
Zeitels, who works for the Center for Laryngeal Surgery and Voice Rehabilitation at Massachusetts General Hospital, said he could remove the growths using a high-tech laser surgery. However, he warned that the disease might quickly return.
"No matter how good the lasers are, we were still getting recurrences…Many folks feel in some ways it can be worse than early cancers, because you are in the medical system often for the rest of your life," Zeitels said.
It is not unusual for patients diagnosed with papillomatosis to undergo 50 to 100 procedures on their voice box, Zeitels said.
Then the doctor came up with a novel idea – treat the disease with the cancer-fighting drug Avastin.
Avastin stops the growth of blood vessels in new tumors, and Zeitels thought it might work against papillomatosis, as well.
"Papillomatosis often grows faster than cancer, because it has an accelerated regrowth of blood vessels," Zeitels said.
When Zeitels approached Niemann about the experimental treatment, the former opera singer agreed.
"We made the decision we were going to try it out and see what happens," Niemann said.
Zeitels removed the growths from Niemann's voice box with laser surgery last year and injected his vocal cords with Avastin.
One year and four additional injections later there is no sign of the disease.
And the best part is that Niemann's beautiful voice has returned.
"I might be in another part of the house and I hear him singing – and then it strikes me – this is really incredible that I am hearing him sing again," his wife Carolyn said.
Some 60 percent to 80 percent of papillomatosis cases are in children, according to the National Institutes of Health, and Zeitels said he will soon begin clinical trials to see if this treatment works for them. This disease is even more problematic for kids because it can become so severe that it blocks their airways, making it hard to breathe.