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From Brain Surgery to Half Marathons: Meet Kelly, Dr. Guy McKhann’s Patient

unusual Chiari malformation patient Kelly
Kelly Rolo

Kelly Rolo, a financial analyst from Orange County, N.Y., says the headaches crept up on her so slowly that she didn’t think there was anything unusual about them.

Eventually the headaches were so consistent that she said the times she didn’t have a headache stood out because they were so rare.

But they were just headaches, she thought. “I never saw a doctor. It was a headache… people deal with headaches. I never even really complained to friends or family about it.”

She didn’t complain even when the pain was bad enough to make her vomit. “I just thought ‘Okay, it’s a Tuesday afternoon, I’m at work and I have a terrible headache and need to go throw up.’”

Then one day, during a bootcamp exercise class, she noticed that half of her body was cold and pale while the other half was red and sweaty. “You could literally draw a line down my face and my body,” she says. “One side was completely ice cold, pale white, and the other side was bright red and sweating.”

It was this strange symptom that finally convinced Kelly to get checked out by a neurologist. But it turned out that the neurologist she saw was much more concerned about her headaches than the temperature differences in her body.

Kelly’s neurologist diagnosed her with a Chiari I malformation. A Chiari I malformation means that the space enclosing the lower part of the brain is smaller than it needs to be. That crowding causes part of the brain to push down through the base of the skull into the spine—where it is not supposed to be!

Normally, a fluid called cerebrospinal fluid circulates in your brain and along your spinal canal. This fluid serves as a shock absorber for the brain and spinal cord. When a Chiari malformation causes part of the brain to push down into the spine it can block the flow of this fluid.

The fluid can build up and put pressure on the brain and spinal cord—a condition called hydrocephalus. In addition, the part of the brain pushing into the spine gets compressed, causing severe upper neck pain. These were the reasons for Kelly’s terrible headaches. She was going to need surgery, so her doctor recommended that she find a good neurosurgeon.

Kelly did her research. After reading about Dr. Guy McKhann and learning about his expertise in treating Chiari malformations, she knew he was her first choice.

But once Dr. McKhann examined Kelly, he found that even with his long years of experience, she had something he had never seen before. Her case was utterly unique. Kelly’s Chiari malformation was man-made!

The problem was caused by a surgery to remove a tumor that Kelly had when she was a baby. Her surgeon at the time had placed an acrylic plate at the base of her skull to cover the area where he had removed the tumor. As Kelly grew, the plate put pressure on her spinal cord and the back of her brain.

Dr. McKhann was able to operate and successfully remove the plate. Kelly says she felt relief from the headaches immediately. “My head felt great!” she says. “Even though I had just had 25 staples put into the back of my head… I actually felt relief!”

Because Kelly’s situation was so unique, her treatment and recovery were complicated. Shortly after her surgery she had to come back for a second hospital stay because she developed an unusual form of hydrocephalus.

A common treatment for hydrocephalus is to place a tube, or shunt, inside the brain to drain the extra fluid into another part of the body. But Dr. McKhann was determined to find a better answer for Kelly.

“He really didn’t want to do that,” she says. “He wanted to explore all the options. He didn’t want me to have to go through the rest of my life with a shunt and worry about infections. He consulted with a lot of different neurosurgeons… he would come see me in the hospital between surgeries to let me know he was working on it.”

In the end, Dr. McKhann succeeded—he found a way for Kelly to stay in the hospital with an external shunt to drain the excess fluid until her body became able to regulate the fluid level on its own. This way she would not have to face a lifetime with an internal shunt to worry about.

Kelly can’t give enough praise to the medical team that pulled her through the surgery and the hydrocephalus treatment. “They were all like a little dream team,” she says.

“I have a lot of stories about Dr. McKhann and the residents and really all the staff at the hospital. I remember the lady who handed out the meals…she knew I was on a lot of steroids, and she was so sweet to me. One of my ICU nurses brought in DVDs for me to watch to pass the time.”

“The residents all had such great personalities, they all joked and smiled. I was kind of… I was pretty down and out. You know, you have certain moments in the hospital. Dr. McKhann and the residents knew when to say to me, ‘It’s going to be okay.’”

Dr. McKhann with unusual chiari malformation patient Kelly
Kelly and Dr. McKhann with Kelly’s race bib

I mean, really,” she says, “how do you thank people who do something like that for you? There is no way to thank them.”

So Kelly thought of a way to show her thanks, instead of just saying it. She was determined to not only recover but come back better than ever.

Kelly had been active before her surgery. She occasionally ran 5K races, but hadn’t been serious about running. Now, feeling so much better, she found that running was a good way to mark her recovery progress.

She started back on her treadmill, just a minute at a time. She says, “I enjoyed seeing if the next day I could do another minute on the treadmill. My goal before I went back to work was to be able to run a mile. It was my mental mark that, okay, once I get there… nobody can take that away from me.”

She did that. And then she thought, “If I can do a half marathon, I’ve got to be 100 percent better!”

Two years after her surgery Kelly ran her second half marathon. She had already proved to herself that she was better than ever, so this time she ran with a different goal in mind—to show her gratitude to Dr. McKhann and her medical team.

Not only did she run the half marathon, she ran it in two hours and nine minutes, beating her previous time by more than half an hour!

Marathon bib for patient with unusual Chiari malformation
Kelly’s marathon bib with “ThxMcKhann”

Runners wear paper bibs when they race. The bibs display their runner number for identification, but runners can also add a name or message to the bottom of the bib—something all the spectators can see as the runners go by.

Kelly ran with “ThxMcKhann” on her race bib and presented the bib to him afterward as her way of showing her thanks to the doctor and staff who made it possible.

“I want them to know their hard work is appreciated,” she says. “I’m better than normal. I’m like Kelly 2.0.”

Learn more about Dr. Guy McKhann at his bio page here.

patient journey

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