Pituitary Adenoma Patient Story

When Perry Milou began experiencing migraines, he wrote them off as merely another act of aggression by his seasonal allergies. Since his early twenties, he was often crippled by bouts of sinusitis and vertigo that stemmed from seasonal allergies. The migraines, he assumed, were just the latest mutation of his symptoms.

"They weren’t that bad at first. But they worsened, to the point that I would have to lay down until the pounding stopped,” Perry says. “On one occasion, I was flying home after a trip to Sicily and I had to lay down on the floor of the plane’s bathroom for over an hour.”

After that episode, he saw his doctor, who referred him to an allergist, who referred him to a neurologist. After his neurologist had him undergo an MRI, he suggested that Perry consult M. Sean Grady, MD.

The MRI revealed an abnormality, a pituitary tumor. More specifically, Perry had what’s called a non-functional pituitary adenoma, or NFA, which is a benign growth in the pituitary gland that doesn’t produce excess hormones. As a result, NFAs don’t cause any symptoms. They’re usually diagnosed only once they begin to impinge on neighboring nerves or brain structures, triggering frequent headaches or loss of vision in the process.

“Dr. Grady was an extremely meticulous person. He exuded a strong sense of command and confidence,” Perry says. “That said, his bedside manner was second to none. And, at this particular moment, bedside manner mattered a lot to me.”

The good news: Perry’s tumor was benign. (Most pituitary tumors are.) Adenomas also generally don’t spread to other parts of the body. But—the bad news—Perry’s NFA was located very close to his optical chiasm, the X-shaped structure formed by the crossing of the optic nerves in the brain, which meant he could abruptly lose his sight. Subsequent testing revealed that Perry’s vision was fully intact.

“It turns out pituitary tumors are fairly common,” Dr. Grady says. “About five percent of the population have them, we know from autopsy studies. But many of them are non-hormone-producing and so are asymptomatic. And they have not gotten to a size to cause a visual problem. Plus, they’re always benign. So, people live with them. We don’t do anything about them unless they’re causing trouble.”

Which Perry’s was. So, time was of the essence, Dr. Grady told Perry. Over the next month, Perry underwent a battery of tests—additional MRIs, bloodwork—to prepare for the surgery to remove his NFA. 

A procedure’s rapid evolution

Perry’s surgery was done on March 23, 2005. “He was one of the first patients to have endoscopic surgery, a type of procedure where we use small instruments to go through the nose to take the tumor out. Which is a much less-invasive approach compared to what we used to do,” Dr. Grady says.

What Perry remembers about the day is that it was pouring rain and pitch-black when he left his Center City condo with his girlfriend—they had to be at the hospital by 5 AM. “I had this apparatus that was fitted for my head, like a helmet, that I was supposed to bring to the hospital for the surgery, but I forgot it,” he says. “So, I had to go back for it. I was just anxious, I think.”

After the surgery, Perry spent four days recovering in the intensive care unit. The memory is mostly a blur, but he says he did begin to feel better with each passing day. He describes his first couple weeks at home as “an exercise in patience like none I’d known before. And it was an incredible learning experience.” About six months after his surgery, Perry says he finally began to feel like his normal self—minus the migraines.

By contrast, the latest iteration of the procedure, Dr. Grady says, is markedly faster than Perry’s was. It’s also even less invasive. The majority of patients now are discharged after two days of monitoring, and they bypass the ICU altogether. “About half the patients say they feel like they have a stuffy nose afterward, and that’s about it,” he says. “Others have described a kind of short-lived nasal headache.”

Forever bonded

Each year, on the anniversary of his surgery, at precisely 6 AM, Perry sends Dr. Grady a short email to thank him. And every year, without fail, Dr. Grady replies within five minutes. Though, the two had not seen each other for years. That changed several months ago, when Perry, a fine artist now based in Bucks County, was asked to contribute a painting to an auction benefiting the Mind Your Brain Foundation. He heard that Dr. Grady was planning to be there, so he decided to present it in person.

“Even though my tumor was benign, I feel like Dr. Grady saved my life,” Perry says. “I’m super-, super-blessed.”