Hey PC, remember me? Although I used to post here a lot, I'm now a professional PC lurker (this site has grown increasingly awesome). I thought that readers might enjoy the draft of a article that I'm preparing for a (unnamed organization's) newsletter. Furthermore, it's important to me to get the word out about endofibrosis (in all its forms) so that others could be spared the lengthy journey I've had with this.

Here tis...

The email I sent to my coach read simply, “It was a hard effort. Not sure what the issue was, but my left leg got totally numb. Is that a bike fit thing?” Sent three years ago after a small local time trial, this was my first inkling that something might be wrong. But like most good athletes, I was adept at ignoring physical issues.

I've been a competitive cyclist for twenty-five years. I entered my first race at the age of 14 after watching Pedro Delgado and Stephen Roche battle it out on the streets of France. Those places seemed so exotic compared to my rural Tennessee town and it allowed me to dream of very different possibilities. The freedom of cycling allowed me an escape from a tricky home life that was growing more complicated by the day. I wish I could say that I was a natural athlete and gifted at all sports I tried, but it wasn't true. I was a roly-poly kid with no role models for how to be an endurance athlete (my first bike was purchased at a lawn mower repair store). So, although I didn't race more than a few races a year before the end of graduate school, cycling was always part of my life and always helped me define who I was.

Over the past 10 years, I became a cyclist. I started racing a lot and doing well. At one point, I had given up ever making it out of the Cat 4s, but then I began to imagine that I could upgrade (and I did). As a psychologist and a university professor, I had flexible time and could train and work how/when I chose to. I spent years in the Cat3s learning how to train, how to race, and how to work my strengths. I love to ride my bike, I love to train hard, and 20+ hour weeks were not uncommon.

Three years ago, when the symptoms started, I was still a Cat 3. At first, it was only during time trials (a discipline I enjoy, despite the fact that I'm a little low-power climber guy). It all started with a numbness in my left calf that eventually went down into my foot and ankle. It's important to note that there was no pain, merely a tingly numb sensation (like when your leg goes to sleep if you sit in a weird position for too long). If I stood up, the symptom would resolve in a matter of seconds. Granted, standing up during flat time trials is really poor form, but time trials were never my strength, so I didn't feel that it made much difference.

A bike fit didn't change things. And I resigned myself to the fact that, during TTs, my leg goes to sleep. Easy come, easy go. But then it started happening on long climbs, particularly at altitude. We have some monstrous mountain-climbing road races in California, and they're my favorites. I recall a stage race up in the high Sierras where, near the top of a 10+ mile climb (at nearly 10k feet above sea level), I started to have the tingly numbness in my left leg. In this case, I had to stand even longer to get the symptom to resolve, but given that I was exhausted, it was a little difficult to do so. I remember looking down at my left ankle to visually make sure that I wasn't hyperextending it, because I could no longer feel anything. My leg grew numb and weak and didn't resolve until I had stood for several minutes. But I’m a tough bastard, so I still managed fourth place that day.

When I originally sent that email, my coach sent me a link to a VeloNews article about Ryan Cox, a South African professional cyclist who had recently died from complications following surgery for a condition called iliac artery endofibrosis. Along with the link, coach’s message was simply, “I hope it’s not this.” So ominous, but that’s how I learned about endofibrosis, a condition that has been estimated to effect nearly 20% of elite-level cyclists to some degree.

Like a good scholar, I turned to Medline to read more. It turns out that iliac artery endofibrosis (IAE) is almost exclusively found in hard-training cyclists and triathletes who spend hours in a hunched-over position across a number of years. The research samples are small because the condition is rarely identified correctly and is often hard to diagnose given that the symptoms only occur when under training load. The primary way to diagnose the condition is to perform an ankle brachial test, which involves riding a trainer (or running on a treadmill) until the numbness occurs and then noting blood pressure differences in the ankles. A CT angiogram can also be used to examine the shape of the arteries to find any apparent kinks or scarring.

My understanding is that the etiology of the condition is somewhat unclear, but it appears that when a cyclist has a small bend in an artery (which would not cause a problem under normal circumstances) the repeated leg-bending and high blood volume causes a type of scar tissue (endofibrosis) to form in the bend. This results in reduced blood flow to the effected leg. The left leg is most common and the most often-reported symptoms are a feeling of woodenness, numbness, tingling, or pain.

After I did my research, I started seeing physicians. I had a well-worn stack of journal articles that I toted from specialist to specialist, saying “I think I have this.” But none had heard of the condition and under any resting evaluation, I’m in better shape than 99% of the population, so I’m not sure they took me seriously. After seeing two vascular surgeons, a neurologist, and an orthopedic specialist (all of whom diagnosed me with something different; one told me merely to take a little ibuprofen before I rode my bike), I simply gave up.

And for two years, I avoided time trials when I could and when I did long climbing races, I made sure to stand frequently before the numbness would start. In spite of it, I managed to upgrade to Cat2 and did pretty well in P/1/2 races.

But then things started to get worse. After long rides, my left leg would feel really tired and tingly (I referred to this as “a leg full of spiders”). It disrupted my sleep and some days, it was just completely empty. Eventually, my leg would go numb when I sat too long at work. In my training log, I just started to write BLD for “bad leg day.” Bad leg days eventually turned into bad leg weeks and my race results started to suffer. Finally, at the top of Mt. Hamilton in San Jose, California in May, 2012 (where I’d been dropped from the Cat2 road race), I abandoned, and coasted back to the car, with renewed resolve to find a solution to this.

Through my connections with coaches and trainers, I’d learned of Dr. Christian DeVirgilio, a vascular surgeon at UCLA who had treated elite cyclists for endofibrosis before. I’d had some email exchanges with him before, but I finally decided to make the trip to LA to see him. He invited me to bring my bike and my trainer and set up in his office.

Riding a trainer always sucks, but it sucks worse doing it in a doctor’s office when you’re working hard enough to make your leg go numb. The ankle brachial test is a wild event like no other. Essentially, I’d ride hard enough to get the tingly sensation (about 5 minutes), hop off the bike, tear off my shoes and socks, and both Dr. D and a resident would check my blood pressure at both ankles. Sure enough, the blood pressure in my left leg dropped relative to my right, but there’s a critical value of difference (i.e., 60%) that I didn’t quite reach. So we did it again…and again. In all cases, my left leg had lower blood pressure relative to my right, but I never crossed the magical 60% threshold that would confirm my diagnosis. However, using a stethoscope, Dr. D could hear turbulence (“bruit”) in my left femoral artery when my leg was bent and based on this, and the relative drop in blood pressure, he decided that more testing was warranted.

I left his office bummed that I didn’t get a diagnosis, but encouraged that I’d found a surgeon who took me seriously, cared about my welfare, and genuinely seemed interested in working to find an answer. One month (and a long battle with my insurance company) later, I returned to UCLA for a CT angiogram. I was scanned lying flat and in a knees-bent sitting-up position (it was a weird squeeze to fit into the tube). Over the next 10 minutes, the pictures began to appear on the radiologist’s computer. And there it was. In my left femoral artery, there was a kink so dramatic that it was clear to both of us. It was a moment so powerful for me that I didn’t know whether I should cry or laugh with joy that I was finally seeing the culprit that had threatened to rob me of my ability to ride a bike. No matter what, it was clear.

The location of the kink was unusual. Most cyclists have iliac artery endofibrosis; my condition is femoral artery endofibrosis, which only affects fewer than 5% of athletes with endofibrosis. Same artery…just a little further down. Also unusual is that my condition was not caused primarily by the thickening of the artery wall, but merely by a kink in the artery that had formed over years of cycling. Essentially, on every upstroke, the artery folded over on itself and my leg was robbed of bloodflow.

In September, 2012, I had surgery to remove the “surplus” artery. I have a four-inch long scar on the left side of my pelvis from the five-hour long surgery. I was able to walk a few steps that evening and was out of the hospital the following afternoon. I kept the pee jug a s souvenir.

I haven’t taken two months off the bike for at least 15 years, but Dr. D warned me that if I rode a bike too soon that I’d “end up as a statistic.” When, after two months, I swung a leg over a bike and rode for 30 minutes, I felt glorious. Yes, my left leg was weak, but it was great to have the wind in my face again. Within another two months, I could train hard again. Although my left leg was weak relative to my right, there was no numbness. It was golden.

…for awhile. It’s now late March and a few weeks ago, I did my first race back since Mt. Hamilton. It was a stage race that included a 10 mile TT; after 9 miles, my leg went dead. And things have been getting worse and although it’s not as bad as it was before, it’s clear that the symptoms have returned. So begins another round of tests and battles with my insurance company (the most likely culprits are scar tissue inside the artery from the surgery and/or the artery has already re-kinked itself). It’s devastating.

…

As a psychologist for amateur and professional athletes, I work a lot with people who are grappling with injuries and/or prolonged illness. Like most of them, the most difficult thing that I’ve dealt with is not feeling like me. It’s a weird sense of depersonalization or as I said once to my girlfriend, “I don’t know who I am right now.” The loss of self or identity disconnects us from ourselves, our friends, and our lives. Cycling is one of the primary ways that I connect with the world; it is my language and my senses. Without it, I feel like the world is gauzy or far away somehow. Furthermore, I miss hurting people; the thrill of competition is one that I love and I wondered how I’d satisfy my need to compete and dig really deep in the heat of battle.

Particular for injured endurance athletes is a feeling of being trapped. Our sports allow us to flee, to fly, and to escape. From my balcony, I can see the mountain range that is my cycling playground. I love it there…but I can’t get there. The sense of feeling hemmed in and constrained is been one of the most difficult parts of this. Like all people, a feeling of being trapped leads to frustration and anger. If taken far enough, it results in a deep sense of hopelessness and loss of desire. Athletes who have been severely injured in crashes feel this even more acutely because, in a real sense, they’re often trapped inside their own sore and painful bodies. I’ve felt all of these feelings –frustration, depression, and hopelessness -- at one time or another. I’ve had moments of deep despair and rage that have taken me emotionally far away from people who love me.

Finally, I just turned 40, so part of what I’ve grappled with is what it means to be an aging athlete. Clearly, I’m a young guy with many years (hopefully) of athletic ability ahead, but this is a glimpse of what it will be like to have “a mind that writes checks that the legs can’t cash.” I’ve been pretty myopic in my pursuit of cycling for the past several years (it’s a sport that demands no less) and it’s brought me many wonderful things, but this experience has drawn my attention to other things, other pursuits, and other ways for me to be me. To be clear, I’m not giving up, but I think that I’ve realized that even if I can’t return to high-level competition in cycling, I will grieve deeply, but survive and find a way to thrive.

The loss of self and the loss of function amounts to a form of trauma that shouldn’t be underestimated. When I say to injured clients that they have experienced a trauma, the look of painful recognition on their faces is all too apparent. Like all traumas, injured athletes have experienced a world-shifting loss that disrupts a sense of safety, security, and predictability. To be betrayed by one’s own body (which, for most of us, has been a great ally) is a shock that is hard to reconcile. For those who have experienced crashes, regaining trust in the bike, the road, and physics can be a journey that takes even longer.

As is often the case in clinical psychology, I find myself saying things to my injured clients that I need to hear. The messages of expanding horizons, seeking answers, feeling useful and vital, and maintaining structure and self-discipline are lessons that I need learn as well. Through their struggles, they have shown me the dignity of perseverance, the price of complacency, and what it really means to be a champion.

Throughout all of this and like many of my clients, I’ve had to find ways to reconnect with my sense of self so that I could feel like me. I found some of this through my clinical work, some through my teaching, some through my relationships, and some through crazy-long walks. I’m trying to start a running program and I’m excited to glimpse what that might be like as a competitive possibility. There is no substitute for cycling, for six-hour rides, for 50+ mph descents, and for a finely-tuned drivetrain, but sometimes substitutes are all we have.

I’ll keep you posted. Thanks for reading.

Dr. Steve Smith is a licensed psychologist (PSY20096) and professor of clinical psychology UC—Santa Barbara. He has a private practice (sparcsb.com, facebook.com/sparcsb) where he works with amateur and professional athletes from all over the country. He can be contacted directly at sparcsb at gmail.com.