Bring Relief to Headache Sufferers
Pat Moty is used to pain. As a multi-sport endurance athlete, he participates in marathons, duathlons, triathlons, road bike and mountain bike competitions. Pat had experience with migraine headaches, but the level of pain that overcame him during a training ride in 2006 was like nothing he ever experienced.
“When I was on the road for my job, I would pull over and sleep off a migraine on occasion,” says Pat. “But the pain that I suffered with my CSF leak made the migraine headaches pale in comparison.”
CSF, or cerebrospinal fluid, surrounds the brain and spinal cord as protection. When it leaks, it can have horrible side effects including nausea, short-term memory loss, hearing changes and agonizing headaches that are only relieved by lying down.
When he was 44, Pat was in the best shape of his life preparing for a race to qualify for the Ironman Triathlon World Championship in Kona, Hawaii and the Boston Marathon.
“A headache that started on a training ride was getting worse and worse,” says Pat. “Whenever I stood up, I felt like I would pass out due to increasing pressure building behind my eyes, ears and in my head. My hearing was muffled and the headache was the worst I’ve ever experienced. The only relief from the pain was to lie down.”
The first time Pat realized something was seriously wrong, he went to a local emergency room where he was treated with antibiotics and steroids and then sent home. Before a second visit Pat says he could barely get out of bed. He was sent home that time with pain medication and a promise for a follow-up call.
“After going to the ER, a doctor who also happened to be a triathlete did some homework,” says Pat. “He was able to tell me I had a CSF leak, but we could not figure out where it was.”
After many failed attempts to seal the CSF leak over several years, the exact location was still a mystery. Pat came to Barrow Neurological Institute. When they found the leak, the location was too dangerous because it was so close to the blood supply for Pat’s spinal cord.
Kerry Knievel, DO, director of Barrow’s Jan & Tom Lewis Migraine Treatment Program, refused to give up.
Dr. Knievel rejected the norms in patient care by finding someone at one of the only institutions in the country able to confirm the location of the CSF leak in Pat’s spine and surgically repair it. But she didn’t stop there. Dr. Knievel traveled out of state twice to learn more about CSF leak diagnosis and treatment.
“My CSF leak took my life from me,” says Pat. “I was not able to be there for my wife and kids who depended on me. I was not able to have a social life. I was not able to work or play. Dr. Knievel dug in and found my solution. I have not only recovered, I have competed again and won.”
Today Pat is 58 years old and proud of what he can endure physically. He competed in the Arizona Ironman Triathlon in 2018 and the Leadville 100 Mountain Bike Race, arguably two of the most grueling endurance sporting events in the country.
Recently he raced in the 2019 Whiskey Off-Road mountain bike race in Prescott, AZ where he tested his health. “In the heat of the race, I hit an obstacle and tore myself up pretty good, breaking my back in three places, my neck in one, three ribs, and a collar bone” says Pat.. The good news is, there is no permanent damage, and the repairs for the CSF leak held up just fine.”
Pat credits his training as an elite athlete for his ability to remember that life can be a marathon (or a triathlon) instead of a sprint. He also credits Dr. Knievel with giving him his life back.
Severe headaches are one of the most common symptoms of spinal CSF leaks. June is National Migraine and Headache Awareness Month. Migraines affect 37 million Americans each year and are the most discussed type of headache, but as Pat learned, head pain has many sources. The neurologists at Barrow’s Jan & Tom Lewis Migraine Treatment Program specialize is finding relief for head pain regardless of the cause.
In addition to providing world-class clinical care, Dr. Knievel also is committed to building a robust headache research portfolio at the Jan & Tom Lewis Migraine Treatment Program. She is currently conducting clinical trials studying migraines and expanding basic research to understand the genetic and environmental factors that cause head pain. With your help, Dr. Knievel and her team can investigate better ways of diagnosing, preventing and treating these disorders.
To support this work and make a tax-deductible donation to the Jan & Tom Lewis Migraine Treatment Program click giveto.supportbarrow.org/migraine.