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Friday, May 18, 2018

When legs simply don't show up 4 - What I learned About External Iliac Artery Endofibrosis

Between July 2017 when my diagnosis process reached a dead end and January 2018, I did not stop training and most importantly I did not stop looking for answers. I spent many hours studying vascular surgery journals looking, initially, for any information that would point me towards a different condition to External Iliac Artery Endofibrosis. Then later my focus shifted towards alternative therapies to surgery because I had, with a high degree of conviction, self-diagnosed External Iliac Artery Endofibrosis (EIAE) and had no hope of getting surgery, certainly not on the basis of an amateur self-diagnosis.
During the period, this is what I have learned about EIAE (for symptoms, see my previous blog "...looking for answers"):
  • The condition affects the external iliac arteries, as the name says, where a layer of tissue grows inside the wall of the arteries.
  • It is not known exactly why the layer of tissue starts growing but in many instances I have read that it has something to do with the 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 because it cannot afford to have a leaking artery. Once the layer starts forming, there is no stopping the vicious cycle because the reduced radius of the artery continues to cause an increased velocity of the blood as it leaves the affected area
  • The endofibrosis can grow to a point of total occlusion (where the artery is completely blocked) but by then atheletes cannot ignore the impact anymore.
  • In some instances, the athletes (especially cyclists) have what is called kinking. The EIAE in that case is said to be caused by the cyclists’ bending position when they ride for long periods. This position  causes the continuous rubbing of the (enlarged) psoas muscle against the artery, again compelling the body to protect the artery. MRI scans and angiograms for such cyclists clearly show the bend in the artery.
  • The condition has been reported mostly in road cyclist and in some publications, the condition is even called the cyclist’s external iliac endofibrosis. I have seen more reports of the condition reported amongst recreational endurance athletes including runners, duathletes and triathletes.
  • There is also reports that the endofibrosis is triggered by the tightening of the inguinal ligament that runs across the external iliac arteries, causing the initial narrowing that sets in motion the downward spiral towards limited blood flow. The diagram below (credit: shows the external iliac arteries as well as the inguinal ligament that crosses them.

  • 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. The most common feedback amongst those that have done the operation is that it is very painful and so imagine having to go through the process twice. Furthermore, 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.
  • 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.
  • 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 smaller, 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.
  • In the future I will write about how I managed to keep training and what mechanisms I used to make sure that I maintained the little that was left of my fitness. Nevertheless, what I have learned is that the endofibrosis reaches a point where aspirin and vasodilators do not assist. The impact of an hour of training is probably equivalent to 3 hours under normal circumstances and that the extent of fatigue that you accumulate from a short session means that you can only do a few sessions a week.
There are many more lessons I have learned and I hope that some of these will come through as I relate my story.  Through this process I came across many positive stories of athletes who not only got fixed but have not been back at the operating table since. That kept me going. 


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