At first, he thought it was the showers, those nighttime showers. Maybe he was getting too much water in his ear.
Mark Hoffman would wake up in the morning to find a pool of liquid saturating his pillow. He started wearing earplugs in the shower, but the fluid still showed up on his pillow.
That’s weird, Hoffman thought. “Where in the world is this fluid coming from?” he said.
For the next decade, Hoffman went to different doctors to try to find that answer. To try to find the cause of this mystery fluid seeping out of his right ear and, sometimes, his right nostril.
He even had surgery on his ear bone. Yet, the problem became worse.
Hoffman, who lives in Akron, Ind., was buying bags full of cotton balls. The more he stuffed them in the ear, it seemed, the more of them he needed.
In December, the 53-year-old retired CNC machinist finally got a diagnosis. And it was unimaginable.
That liquid? It was brain and spinal fluid leaking from his body.
“When they told me that? I knew that was going to be pretty serious,” said Hoffman.
The official diagnosis: Spontaneous cerebral spinal fluid leak.
In essence, the fluid that bathes Hoffman’s brain was leaking out through a hole in his skull bone and then dripping out his ear and nose.
By the time Hoffman got his diagnosis, he didn’t care what it was. He just wanted it to end.
He was going through about 200 cotton balls a week. He was sleeping at night sitting straight up in a chair.
The doctor who finally diagnosed Hoffman was Rick Nelson, M.D., a neurotologist with the Indiana University Health Neuroscience Center.
Dr. Nelson performed surgery on Hoffman in December and immediately found where the leak was coming from, a microscopic rupture in the thin layer covering his brain. Dr. Nelson and his team surgically rebuilt the surrounding area to stop the leakage.
In essence, Dr. Nelson said, the surgery to fix it “was like patching a tire from the inside.”
And while such a condition is rare, it’s becoming more and more common, said Dr. Nelson – especially in his practice.
The frequency of spontaneous cerebral spinal fluid leaks has doubled in the past 10 years, a number based on statistics from a national database of academic health centers.
Why the rapid rise in the diagnosis is occurring is something Dr. Nelson is researching. Initially, he has found that the condition happens more often in women than in men and that being overweight is one of the biggest risk factors.
There also is a likely correlation between spontaneous cerebral spinal fluid leak and sleep apnea.
As much fluid as was oozing out, Hoffman said he often wondered where it all was coming from.
“If people are leaking, they will just make more,” Dr. Nelson said.
After the diagnosis, Hoffman also wondered how dangerous the leak was.
Very dangerous, Dr. Nelson said. There is a high risk of infection with such leakage, including meningitis.
As Hoffman sat at the IU Health Neuroscience Center earlier this month, he talked about the gravity of his condition.
He also talked about his gratitude to Dr. Nelson.
“He had it figured out in 10 seconds, something that I had been trying to get figured out for 10 years,” Hoffman said. “Everyone told me this was the best place I could be. And it was.”