Cyclist's (or Athlete's) Iliac Artery Syndrome – Could you or someone you know be a sufferer?

in cycling •  11 months ago  (edited)

I am a multi-sport endurance athlete and have been diagnosed with a condition called External Iliac Artery Endofibrosis that limits the amount of blood that goes from the heart to the legs. On the surface, the condition presents as fatigue or under-training and while applying techniques to increase fitness and/or reduce fatigue, performance continues to decrease until, in worst cases, an athelete quits all sporting activities. There are many professional athletes that have suffered from this condition, including Joe Dombrowski, Stuart O’Grady, Bert Grabsch, Tony Gallopin, Theo, Bos, Sally Bigham (Mountain Biking), Mel Hauschildt (Triathelete) and Yolande Speedy (mountain Biking). I take as many opportunities I can to raise awareness in order to save other athletes the time and the frustration that I and many other endured before we finally got to the correct diagnosis.

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I have previously written a piece on the symptoms and how, as an endurance athlete, I was affected and this is a just a follow up to share more information.

This is some of what I have learned:
• The condition affects the external iliac arteries, as the name says, where a layer of tissue (not fat) grows inside the wall of the arteries. This should not be confused with atherosclerosis that is found in people with high cholesterol or are overweight.
• Although the condition is sometimes called the Cyclist Iliac Artery Syndrome, it actually affects other athletes too, but mostly runners, duathletes, triathletes and apparently swimmers too, especially those that participate in endurance events.
• It is not known exactly why the layer of tissue starts growing but it is understood to have something to do with the high velocity of blood hitting the artery wall and causing an irritation. This is during extended periods of training or racing. The body then responds by forming a layer of protection inside the artery.
• There are also reports that the high velocity of the blood is triggered by the tightening of the inguinal ligament (see diagram above) that runs across the external iliac arteries (think about what happens to running water inside a hose pipe when you squeeze the hose). The increased velocity of the blood forces the body to develop a protective layer and this initial narrowing sets in motion the downward spiral towards limited blood flow.
• The endofibrosis can grow to a point of total occlusion (where the artery is completely blocked) but by then athletes cannot ignore the impact anymore.
• In some instances, the athletes (mostly cyclists) have what is called kinking of the artery. The EIAE in that case is said to be caused by the cyclists’ bending position when they ride for long periods. MRI scans and angiograms for such cyclists clearly show the bend in the artery.

Image from an athlete's blog:

• The majority of exclusive cyclists are not only unilateral (one artery affected) but also have endofibrosis on the left artery. No one is able to say exactly why this is the case.
• A small number of athletes are bilateral (endofibrosis is on both arteries) and unfortunately under that circumstance, they require 2 operations to remedy. Athletes that are bilateral have no “strong” leg and so they are the most likely to quit the sport altogether. I have read blogs of unilateral athletes whose drops in performance did not warrant them quitting altogether. Actually one athlete was a podium finisher who declared that he continued to finish on the podium, but obviously through great pain, grit and bucket loads of determination and certainly on borrowed time.
• This condition is said to be rare but I think it is just under-diagnosed. I believe that many athletes, especially those that are not professional, have less incentive to keep doing the sport and they simply just give up and move on. I am an endurance recreational athlete and I simply refused to accept that the rest of my life will be a semi-sedentary existence.
• It is estimated that athletes take on average 4 years before they start perceiving the effects of the endofibrosis and then it takes an average of another 3 years before they get to see a medical practitioner that can assist them. I think this period is getting lesser, thanks to sufferers who continuously raise awareness. Unfortunately in the 3 years, the sufferers are subjected to endless blood tests, excessive resting, multiple scans, alternative medicine, dry needling, physiotherapy, back operations etc. before they get to an accurate diagnosis. I came across an athlete who was forced to leave professional level cycling prematurely many years ago and is deeply aggrieved by this.
• There is very little that can be done about the enfofibrosis, especially if an athlete has reached a point where even going up a flight of stairs triggers the symptons of fatigue and sharp pain.

Because of limited blood flow to the legs, a typical 1 hour training session (for a bilateral sufferer) is equivalent to about 3 hours and this means fatigue is one of the biggest issues that need to be managed.
Many sports medics and vascular surgeons are not familiar with this condition. There are very few vascular surgeons and sports medics that know about the condition and even very few that have developed mechanisms to diagnose it. Moreover there are also very few that have mastered the specific solutions that are effective for athletes. For example, while balloon angioplasty works for people that are barely active, it offers only temporary relief to athletes. The more I read about the condition, the more I came across many scenarios of “trial and error” and re-operations that athletes had to endure.

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