An image from the author’s CT scan
I really am like Humpty Dumpty. Every time I climb back up the wall, I have a great fall. Still, I’m not giving up on the hope that all the King’s horses and all the King’s men can maybe, eventually, put me back together again. This is the story of my latest battle: External Iliac Arteriopathy, a rare vascular disease that targets endurance athletes.
I have Google to thank, in part, for the diagnosis—a patient’s helper and a doctor’s worst nightmare. In the last two years, I’ve diagnosed myself at least 100 times with everything from sore muscles to tumors. It was the morning of yet another frustrating, failed and painful run. I came home and Googled what I was feeling: “loss of power in leg, burning, weakness during vigorous exercise.” I swear, it seems I’d searched similar symptoms every day for the past two years and just kept hitting one dead end after another. For the first time, however, I came across a diagnosis I couldn’t even pronounce properly: External Iliac Arteriopathy/Endofibrosis. This vascular disease is a kinking, stretching, or narrowing of the external iliac artery, which supplies blood flow to the lower leg and is likely the result of an extremely tight psoas or inguinal ligament caused by an aerodynamic cycling positioning and repetitive motion.
This nugget was my new beacon of hope. I was afraid to say anything to anyone though, because quite frankly, they were just as sick of my endless self-diagnosis as I was at suffering through them. The more I read, however, the more I kept thinking, ‘This is me! This is me!’ I’d never before considered a vascular issue.
I had explored almost every other system in the human body to determine why my right leg would simply die during vigorous exercise. In May 2010, I had an arthroscopic hip scope (link) to repair a torn labrum. While that certainly helped with the hip pain I experienced, it didn’t cure the loss of power and ischemia. And it wasn’t like I hadn’t exhausted my options: I’d endured a series of nerve conduction tests to rule out sciatic nerve or back culprits, I’d succumbed to steroid injections into my hip, back and piriformis, I’d had countless appointments with ART practitioners, acupuncturists, and even a prolotherapy specialist. The only road I hadn’t turned down was the road that pointed to a potential vascular issue. And yet, when I read the symptoms, it all seemed so obvious.
What a sight I was heading up to the doctor’s office with my tri bike, trainer, and bike shoes in hand.
When I discovered that professional triathlete, Belinda Granger, was diagnosed and treated with this disease in 2009, I was encouraged. She was willing and anxious to share her story because she feels that it’s more common than we think, but still relatively unheard of in the mainstream world of sports medicine. While I was hopeful I had found my diagnosis at last, I was still skeptical: most cases of this disease are diagnosed in very high-level cyclists and triathletes, which I am not. I’m your typical age grouper who doesn’t log nearly the hours and miles that the elites do every day.
When I read about Granger’s frustration with finding a diagnosis, though, I knew I had found an advocate. She too had exhausted every other avenue and test, and went through a period when she thought that nobody would be able to discover what was wrong with her. “It was driving me insane,” she explained. “Every test came up negative and basically I was being told that I had nothing wrong with me. It was extremely frustrating.” Amen, Sister.
Granger finally found the solution she sought with the help of Leon Vogels, a physiotherapist in Brisbane, Australia. He was a former pro cyclist who had come across this disease numerous times. After performing some diagnostic tests on Granger, he was almost certain she had the disease. He sent her to Dr. Roger Bell, a vascular specialist in Melbourne. There, he was able to conduct a series of tests to confirm the diagnosis and proceed with surgery.
In January 2011, I met with a vascular surgeon in Austin, armed with my own suspicions. He’s also a runner, which was important to me; I wanted to meet with someone who would be empathetic and actually listen to my case history. He listened, and even looked at the article I brought with me describing the disease. The first test we did was a non-invasive Doppler ultrasound on the external iliac artery. It came back normal. There didn’t seem to be any kinks or abnormalities in the sound waves. Most likely in an effort to appease me, the doctor then ordered a CT scan to provide a more extensive visual. Essentially, he (and I) assumed he would show me the gorgeous images and I’d be sent home with a color printout of my pelvis and a patronizing pat on the back.
Alas, when he pulled up the results of the scan, there in all of its 3D glory, was a very obvious narrowing of my external iliac artery. The right leg looked significantly different than the left leg. I think I went numb when he was speaking. Part of me was relieved to know that I wasn’t completely insane, but then part of me was scared of hearing the next steps. With honesty, the doctor explained that this is a relatively new diagnosis and one that he has actually never personally treated. He half-jokingly congratulated me for my diligent self-diagnosis and then asked for a few days to do some research, speak to colleagues, and have the radiologist make a final confirmation.
Two days later, I had my answer. The diagnosis was confirmed with the radiologist report. Like Granger, a multitude of pro cyclists and probably countless undiagnosed athletes, I had a vascular disease that would require invasive surgery—my second surgery on my right leg in a year.
My heart, soul and purse strings were invested in this race. I wanted it in the worst way.
But first, one more diagnostic test to confirm the lack of blood flow. It’s an ABI Test, or Ankle Brachial Index test. Quite simply, they measure the blood pressure in your ankles both before and after vigorous exercise to measure the changes. What a sight I was heading up to the doctor’s office with my tri bike, trainer, and bike shoes in hand. A lot of vascular patients are older, obese, and/or smokers with years of unhealthy habits behind them. Then, off the elevator walks a 37-year-old fit female in Lycra. The office staff wasn’t used to seeing someone like me in their office, and I created quite a stir. My biggest fear was that I would do the test and it would come back normal … no blood pressure drop. I was so thankful for my friend Heidi, who accompanied me to the appointment. I was a nervous wreck on the inside, and she would hear and ask the questions I might not be capable of asking.
They took the blood pressure in my arms and ankles at rest to determine my base setting. Then I was told to exercise until I started to feel the pain. I really didn’t want to prolong the agony, so after an easy warm-up, I said, “Let’s get this over with,” popped into the heaviest gear, and climbed uphill for another two minutes. After four minutes, they took my blood pressures again. Ideally, when your heart rate goes up quickly, your blood pressure will also rise. And that is exactly what happened—in my left leg only. My right leg, however, was exactly the opposite. The blood pressure in my ankle dropped by 60 percent after only four minutes of exercise. Blood was clearly not reaching my lower leg.
Surgery was imminent, but first, several decisions had to be made. The specialist in Austin had diagnosed the disease, but had never treated it before. He recognized Dr. Kenneth Cherry, from the University of Virginia Health Care System, as one of the leading researchers in the United States on this disease who has been actively treating it for several years. My husband and I made contact with Dr. Cherry, who asked us to send my images and test results. We shipped them over night and received a phone call the next day: “You have this disease in spades,” he explained. “There is nothing subtle about it.”
That was in February. Part of me wanted to fly to Virginia to have surgery immediately, but there was one roadblock. We were both signed up for the Inaugural Memorial Hermann Ironman in May. If I proceeded with the surgery immediately, I would have to bow out of my second Ironman in as many years due to this nagging injury. My heart, soul and purse strings were invested in this race. I wanted it in the worst way. After all, it was supposed to be my victory race after last year’s hip surgery. After discussing the risks of prolonging surgery and continuing to train, I made the decision to keep training for the Ironman and have surgery in June, immediately following. I knew I was taking a huge risk. I knew I was increasing my chances of further damage to this and other areas of my body by taking on the challenge of training 18 to 20 hours per week. But I worked closely with my coaches and trainers on my plan. I did very little running compared to conventional plans, focusing mainly on cycling to minimize impact. I was also doing twice-weekly strength training sessions that involved functional movement patterns, as well as core work and stretching. I also attended yoga classes on a regular basis to maintain flexibility.
The next few months were filled with good days and bad days and towards the end of training, I wasn’t sure which announcement I was more excited to hear: Mike Reilly exclaiming, “You are an Ironman,” or Dr. Cherry professing, “Your surgery was a success.” I was certainly hell bent on hearing both.
Stay tuned for Part II of this article series describing the surgery and recovery process. (Now published here.)
Carrie Barrett is a USAT Level 1 Certified Coach and freelance writer based in Austin, Texas. Her articles have appeared on Livestrong.com, Runner Triathlete News, Inside Texas Running, and the recent triathlon anthology, The Meaning of Tri. Barrett is also a member of Erin Baker’s National Triathlon Team. For more information on her coaching, speaking and writing, visit fomotraining.com