Donnenfeld said the condition forced him into early retirement, when he was 51 and the CEO of a drug company that manufactures and markets TheraTears, an over-the-counter product that treats dry eyes.
Donnenfeld now sits on the national board of the Acoustic Neuroma Association (ANA), a nonprofit organization based in metro Atlanta, and is kicking off a town event to spread awareness of acoustic brain tumors and raise funds to help patients with the rare type of tumor on the hearing and balance nerve.
He is challenging friends, family and community members to join him in taking a plunge into the freezing waters of the Atlantic Ocean at Fisherman's Beach this Sunday at 10 a.m. The event, started by Donnenfeld and appropriately called "The Great Brain Freeze," is benefiting the ANA. His goal is to raise $8,000 and make the plunge an annual one.
"The way you do a brain freeze, I guess, is to run into the ocean in the middle of winter," Donnenfeld said. "I'm going to shave my head, put an X where my tumor was with some chalk and I'm symbolically going to erase the tumor by going into the ocean on Sunday. I'm doing it to raise awareness for all of the people who suffer from (acoustic) neuromas."
Donnenfeld said people with the condition suffer in silence for the most part. He said the event was also meant as a way to create a little bit of kindness and awareness for the other illnesses people might struggle with that others may not be aware of from looking at them.
The condition is rare, with ANA's advisory board reporting that occurrence is one of every 100,000 people, translating to 2,500 to 3,000 being diagnosed annually in the U.S. The early symptoms include a reduction in hearing in the ear with the tumor, ringing in the ear, a feeling of fullness in the affected ear and balance issues. There is no known cause of acoustic neuroma.
"My symptoms, full deafness in my left ear and extreme sensitivity to noise, have permanently affected my life," Donnenfeld said. "And yet, I consider myself one of the lucky ones."
About six years ago, when he was just turning 50, Donnenfeld said he started to have a little ringing in one of his ears, which didn't seem like too much of a big deal to him. He saw his doctor, who referred him to an ear, nose and throat specialist, who told him that his symptom was probably from just a virus, but to see what happened over a month or two.
Donnenfeld said he started to have some hearing loss in his left ear, and was tested for acoustic neuroma, also known as vestibular schwannoma. When the tumor was found, he was told to do something called watch and wait, and was eventually treated at Massachusetts General Hospital.
He was told that his acoustic neuroma wasn't too big, as it started out at 6 or 7 mm, but that if it got too big, it could cause serious brain damage — his grew pretty quickly over six months to a year and was told by his doctors that it had to be dealt with.
"It scared the (expletive) out of me," Donnenfeld said. "It was absolutely terrifying."
His doctors eventually concluded that Donnenfeld would have to undergo proton beam radiotherapy, which radiates the tumor touching up against the brain. He had the procedure done about four and a half years ago.
He said the radiation is not to try to eliminate the tumor, but to stop the tumor from growing. He said the goal is to scramble the DNA of the tumor so that it can't reproduce and make any more daughter cells, which enables the tumor to grow.
Donnenfeld said living with acoustic neuroma is tough, but he believes that his tumor is under control. He said it stopped growing after his radiation. He has had three or four follow-up MRIs and is under the care of the doctors at Mass General.
He credits the ANA for providing him with treatment options, a network of people willing to share their neuroma experiences and a local support group where he found information and comfort from others who have neuromas. He called the organization a critical resource for people with acoustic neuromas.
Donnenfeld said the upcoming event is a way for him to try to give back and make something good out of something bad.
"I'm doing fine," Donnenfeld said. "I have incredible friends and a girlfriend and people who care about me. I wanted to do something for all the people out there who have this awful condition and nobody knows about it."