When legs simply do not show up 5 - Drastic Measures

The more I read about External Iliac Artery Endofibrosis (EIAE) the more I was convinced that there are many others like me out there, especially in South Africa where the county literally punches a little above its weight in terms of participation in endurance sports. My out-of-hospital medical aid funds had ran out by the time I reached a dead end (around July 2017) and so I took the time to plan my next attack. I was certainly not going to do the same things I did the first time around and hope for a different outcome! I needed to think things through and did not have as much "trial and error" wiggle room as before.

So this was the plan:

-  Write an elaborate document that details as much information that I can remember regarding my activity levels over time, races, performance, injuries, supplements, scans and tests I had completed up to that point. I titled the document “On tired legs”

-  Take the document and send it to South African Sports Medics and Vascular Surgeons and with a bit of luck I will get a response from one of them that can assist me or knows someone that can. In the document I was even offering myself as a “case” for postgraduate students to consider. I was a bit ambitious there I must admit.

I only really completed the document in January and by February 2018 I was already sending emails. I did not get any positive responses from anyone and with my condition getting worse, I was running out of patience. I then decided that if I am not making progress in South Africa, I will have look for assistance elsewhere. Through reading articles and journals on EIAE, I got to know the names of the few doctors that were world leaders in the diagnosis and resolution of my condition and so my next focus was on finding out from them whether they know of South African doctors that can assist. I sent an email to Dr. Goof Schep in the Netherlands and in less than 2 days, he had read my document and told me I had 70% chance that I had EIAE and that the only way to confirm that was for me to come through to their specialist medical centre for testing. He personally did not know of any doctor in South Africa that he could refer me to.

My immediate question was whether I would afford the cost, not only of flying and staying there for a few days, but more importantly, the medical procedures and scans that are required for the diagnosis. The pleasant surprise was that the cost of the all the tests (including MRA and Doppler) together with his time and that of the vascular surgeon would cost less than what I had paid in total in South Africa in 2017. Notwithstanding the fact that I had nothing to show for the money that was spent on all the investigation that I did in South Africa. I must stress, this is typical across the world - the condition is not widely known. I am still lucky that it took less than two years to get a diagnosis.

I wrote an elaborate document to my medical insurance, trying to convince them that for a fraction of the original cost, they could pay for my tests in the Netherlands and that we were at the least guaranteed a diagnosis. I would pay for the travel and accommodation but the answer was NO….my benefit does not include overseas medical care, even if it is cheaper.

I was desperate and I thought I was left with no choice but to go to Maxima Medisch Centrum in the Netherlands in order to proceed to a post-diagnosis stage. I was convinced that after completing this key milestone, I should be able to find a vascular surgeon in the country that can do the surgery.

At a train station in Amsterdam - en route to Eindhoven

And so on the 20th of March 2018 my fiancé and I left Johannesburg for Eindhoven in the Netherlands to spend a day and a half with Dr. Goof Schep and Dr. Mart Bender (Vascular Surgeon), convinced that we are going to come back with either a confirmation that I have EIAE or that I do not have it. That would be a giant leap forward for us, either way!

Coming out of the taxi at the Maxima Medisch Centrum, Veldhoven

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: https://musculoskeletalkey.com/hip-and-pelvis/) shows the external iliac arteries as well as the inguinal ligament that crosses them.

https://musculoskeletalkey.com/hip-and-pelvis/

• 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. 

When legs simply don't show up 3 - Looking for answers

I walked into a GPs room early in March 2017 knowing that I was there only to get a referral to a medical specialist – but at the time I thought I would probably be referred to an endocrinologist. I had over a few weeks, already ruled out many possibilities…. Mostly I believed very strongly that I was not injured, had no fatigue (nothing in my training history pointed to excessive training) and I was still reasonably fit. What I suspected was that my body had lost its ability to produce hormones that should prepare it for rigorous efforts. The fact that I developed symptoms only during training was a vital clue. After listening to my story (one that I would relate many times over), the doctor referred me to a Sports Medic.

The length of time between my perception of “the symptoms” and the Cape Town tipping point was more than sufficient for me to be very articulate about what I felt was wrong. I was able to clearly explain to the doctors that:

I have problems maintaining a heart rate of about 150bpm for up to 3 minutes

- After about 3 minutes above 150 bpm, I am forced to stop as I develop extreme fatigue that leads to pain on the calves;

- The fatigue later gets to the quads and hamstrings;

- In some instances, I reach a point where my feet get numb – especially when I am on the treadmill and on the stepper when I spent about 1,5 hours training;

- The symptoms are greater at the start when I have not warmed up and get better after about 30 min of exercise. The pace gets slightly higher and I can manage the climbs a little better but after about an hour and a half, my performance declines again;

- On the bike, I can barely keep up on climbs with the most under-trained people I know. On flats it is much better when I have not fatigued. On the bike, the quads take the most strain;

- I have gone from an FTP greater that 200W to below 100W. In recent times my best power output is 85W average over 1 hour,  at an average heart rate of about 125 BPM;

- I find cycling easier; Running presents the most struggle and I feel the effects (fatigue) many hours after the run – even under conditions where I was taking periodic rests.

Painful needling for my tight calves - 5 needles on each leg

After going through my sporting and medical history with my Sports Medic, the first tests I was prescribed were “bloods”. While I waited for the blood test results, I was also referred to a physiotherapist to assist with the tight calves and to rule out any possibility that they could be the cause. He was shocked at how hard they had become and so a very painful course of dry-needling followed.

The blood tests were all “negative” except one test which was of concern - CK-MB (Creatine Kinase MB) that was high. I was asked to take aspirin and immediately I noticed the next day that I was able to complete a 1 hour indoor cycling session without stopping. I did not perceive any improvement in the running though. Because of the high CKMB dosage, I went for an ECG Scan. I could not complete the scan and the highest heart rate I was able to reach was around 155bpm. We had to abandon the test as my calves were too painful.

I was then referred to a Cardiologist who conducted another ECG (even though I had one already), additional bloods and an Echo (Echocardiograph) – once again I could not reach heart rates higher than 155bpm on the ECG.  He also checked pulses from my arms down to the legs – but at rest, they turned out identical.

Next I did a Doppler Ultrasound, at rest, and after many attempts, unfortunately the doctor could not pick up restricted blood flow. The doctor also spent a lot more time trying to see whether she could pick up Popliteal Artery Entrapment Syndrome (she had a patient that had the syndrome) and again the results were negative.

I was then referred to a Vascular Surgeon and after considering all my history, prescribed a CT Scan, and again this did not provide any leads. The investigation then proceeded to an MRI scan and this time around I persuaded the radiologist to allow me to run up and down the stairs until I induce the symptoms. Again the scans did not reveal anything actionable.

We had sort of reached a dead-end and the advice I got from the Surgeon was that I continue with my training regime and wait for the problem to get worse, hopefully in another 6 months, we could start with another series of tests, starting with the Doppler.

When legs simply do not show up 2 - The Writing on the Wall

My weekly training plan used to include at least one interval training session on a Wattbike and each session started with about 15 minutes of warm up. The Virgin Active Groenkloof where I did most of my training at the time had 4 Wattbikes on the ground floor – thank goodness for that – and on this particular morning the bikes were not busy at all. I climbed onto the one bike with the soft saddle, as usual started my warm up while I paired my Garmin watch with the bike and set up the music. About 5 minutes into the ride I felt like I was on high resistance and so I turned the dial down and removed all resistance. A few moments later I looked at the power output and the reading was around 50W – close to nothing, and very odd. But my legs felt like I was riding up a steep hill at 200W power and so the stationary bike was clearly out of order.

I quickly stopped and moved onto the next Wattbike – I would have hated to put in a whole hour of training and then end up underestimating the amount of effort I put it and obviously the level of fatigue accumulated too. As I was going through the same motions of setting up, I noticed someone getting onto the faulty Wattbike and I quickly remarked to him that the bike was out of order. But just as I was settling down on the new bike, I looked again at the power output and got the shock of my life. Resistance was low, output was around 50W but again my legs were very hard at work. I could not believe what I saw. That was around August 2016.

For many weeks after that, my legs, especially the right one, became lazier and eventually I started to even take rests on the stationary bike. Post-workout stats indicated that I did not actually have a fitness problem, but rather a power problem. My output matched my heart rate but I could not understand why I was not able to engage higher heart rates. Around the same time I realized on my runs that I needed to take constant rests during a 10km morning run, something that had never happened before. But for many weeks I believed that this was a passing phase and that I will eventually get my fitness back.

I did the 3 Towers MTB Stage race in late September – literally finishing at the back and in many instances, getting a push from my partner on steep climbs because I was too slow. A week before the 94.7 Cycle Challenge I did an afternoon run and the intervals at which I had to stop were a lot more frequent than before and worst of all, a walk was no  longer sufficient to recover. I literally had to get to a complete stop to calm my calves and Achilles down. At the 94.7 Cycle Challenge I started a little after 7am – I had a fairly good seeding from MTB races the previous year – but cyclists would ride past me and then pass nasty comments about my legs not having showed up. It was humiliating but also physically painful. Nevertheless I managed to pick up some pace and completed 4:44, average heart rate of 136bpm - I hardly raced. On the surface this does not look like gross underperformance but for the effort that I put in, it was very discouraging.

Since my performance was noticeable only at high BPMs, I thought an expedition up Mount Aconcagua in Argentina would be ok. But even at the time. The first hour of the climb was always the hardest – and although the biggest factor for not reaching the summit was weather, I think I would have had a better chance to withstand the impact of the weather if I was at top form in terms of output from the legs.

Then in February 2017 I participated in a trail run in Grabouw, Cape Town that saw me ending the race in tears because for the first time I admitted that something was awfully wrong and that the problem was not only persistent, but it was getting worse. After that run I saw the writing on the wall, in big bold letters, and I could not ignore it anymore. That same week, in early March 2017, I made an appointment with a Sports Medic, marking the start of my long mission to get to the bottom of my leg problem.

When legs simply do not show up - The Intro

The last time I had a really good run was in July 2016 in Tershelling Island, The Netherlands. I recall most of that run - it was on a flat terrain, sea level, barely off-road, fresh island air and beautiful surroundings – really fantastic setting. I did the 20 kilometres without much effort in 01H55 and this was not really surprising. Weeks prior to that, I had been consistent and focused in my training as I had set my goals to running Comrades 2017 in under 10H30.

The training ahead of that has been going so well that I recorded on the morning of the 30^th April 2016 a personal best pace of 5.08 min/km over 10km. My hard work was paying off and it was really great. For the first time in a while I was feeling like my sweat was actually yielding results, unlike in the past where the link between hard work and results was often a huge blur. I had accepted some time ago that my level of talent as an endurance athlete requires me to train a lot harder than others only to just make the cut into the back end of the field. It was a fact of life that I had no issue accepting.

In hindsight, with my level of training, especially in early 2016, I should have been showing a lot more decent performances. In essence, my training was for some time, sufficient to just beat by a small margin, the effects of a condition that was brewing in my arteries.

   

For many years I had no reason to believe that there could be a much more profound explanation for my “slight” underperformances. For starters, I could still enter ultra-distance races and complete them. In February 2016 I entered the 7 stage TransCape MTB and finished, but right at the back of the field and taking maximum stage time almost every day. At the beginning of every stage, I always noticed how everyone seemed to be riding fast; yet I would catch up with the last groups and sometimes even drop them before halfway.

 

It turns out that I have been suffering from a condition called External Iliac Artery Endofibrosis and unlike many athletes that developed the condition, it took me about a year to get diagnosed. Others took as many as 5 years and many professionals were forced to abandon their careers just as they were taking off – serious matters of full potential never reached; dreams forsaken – but I think the worst is not knowing what is wrong and being forced to abandon your aspirations under those circumstances.

   

My story is not at all unique – I and many others share identical stories of a long, difficult road of misdiagnosis, painful physiotherapy sessions, dry needling, expensive scans, endless blood tests and referrals to a wide range of medical specialists. What we also have in common are stories of DNFs, despair as performances drastically deteriorate and the gloom every time we reach a dead end. But the most common thread is that out of desperation we’ve all had to spend many hours doing our own research to get to the answers. I have come across many stories of athletes that took piles of journal articles to their sports medics to shed some light; and yet many others who were still told “Impossible!”

This is because a fit athlete is not supposed to have symptoms associated with what is called Intermittent Claudication. This is a vascular condition more common in the elderly, people that smoke, people that are overweight and those that have high cholesterol. The least understood cases of intermittent claudication are those that appear amongst fit athletes that train for and participate in endurance events such as ultra-marathons, long distance cycling and triathlons. The condition is often described as rare, but I think it is a matter of serious under-diagnosis, especially amongst recreational athletes. I think that athletes that are not professional simply choose to move on given that the stakes associated with giving up on endurance are not high.  

I still fantasize about my return to my normal self; I cannot wait to go on long runs and rides across the mountains, on rocky single tracks, in the forests, crossing the rivers and up the steep hills. I would like to take a second shot at climbing Aconcagua and then move on to conquer climbs over 7000 metres . My Comrades Marathon medal counter came to a scratching halt at number 7 in 2015 – I would like to get my green number and now that I have been diagnosed, I am optimistic and upbeat. But in the mean time I would like to share my story in the next few blogs – with the hope that many other athletes learn from it and that no one has to go through the trial and error that many like me have experienced.