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Sunday, June 3, 2018

When legs simply do not show up 6 - The Breakthrough

I completed the admission process at Maxima Medisch Centrum in Veldhoven, Netherlands without any hiccups. SportsMax, the Sports Medicine Unit of the hospital was on the other side of the building but I made it right on time for the appointment with Dr Schep, the Sports Medic at the unit. As he appeared from his office, he needed no introduction because I right away recognized him from a few online photographs. I involuntarily called his name out loudly, in a way taking away the ice-breaker duty from him, and of course creating a tiny awkward moment right there. After short introductions, he asked us to wait for him while he completed another task. I took the time to look at the murals on the walls – admiring the painted images of athletes participating in various sporting codes and taking a picture or two in the process.

At the Sportmax Maxima Medisch Centrum, Veldhoven, The Netherlands
The consultation was kicked off with a detailed discussion around my sporting history and intensity as well as my symptoms and affected areas of my body. This was followed by physical examination to rule out, I suspected, nerve and spinal issues as possible causes of my complaints. Thereafter we proceeded to pre- and post-exercise Doppler and almost immediately he was able to pick up flow limitations and he was able to estimate the restriction. The Doppler was done with my body flat on the bed and in a crouched position similar to how road cyclists and time trialists ride.

We did not discuss the outcome in detail but I went to the waiting room for the next set of tests. These were the ECG (with Ankle Branchial Index) and having gone through similar maximal tests (towards your absolute limit), I was secretly pleased it was on the bike and not on the treadmill.  I know that without a 45 min warm up, I was going to reach my limit pretty soon and so I decided I was not going to back off before I reach 150W – and this is close to nothing – but if you have severe blood flow restrictions on both legs, this is really on the side of maximum. As soon as I reached a point where I could not stand the pain any longer, I got Blood Pressure meters attached to my arms and legs (with my legs raised) and my pulses were measured. Again, not much discussion after this as I sent to another unit to do the MRI scans.

Some of the testing at Spormax
These scans were becoming very routine to me and so I did not need much coaching and did not have questions to ask. The odd thing is that I did the exact same scan in Pretoria and so I wondered how different the new image was going to be. After the scan I was able to sit down to have some lunch while the report was being compiled for Dr. Schep and thereafter it was back to the Sports Medicine Unit to hear the verdict.

As suspected, the diagnosis of External Iliac Artery Endofibrosis was confirmed, stenosis of about 50% across almost the entire lengths of both arteries; and no kinking. At that moment it was like an entire load was taken off my shoulder.  I was overcome by emotion, for all those times when I insisted I had a major problem but could not get medical technology to corroborate. For the many morning when I returned from a run or ride and felt emotionally defeated and physically drained. For the many hours studying not only flow limitation amongst athletes but also trying to determine the best combination of training effort and supplements to slow down the speed at which I was accumulating fatique. This was the breakthrough I needed.

The next day we met Dr. Bender, the Vascular Surgeon, to discuss the options that were available. He made sure that I understood the risks associated with surgery and that doing nothing about the endofibrosis is also an option, especially for non-professional athletes. But that would mean that I opt for extremely low levels of activity and hope that it never gets worse. We spent most of the time discussing in great detail the surgical procedure (endarterectory with vein patch) and by the time we left, I was pretty sure that surgery was the only option for me.

I would not have gone as far as making the necessary sacrifices to get to a specialist unit for a diagnosis if I felt I could “live” with the problem. I am an endurance athlete and I almost feel like I am trapped in a body that no longer recognises this. I know that many people will not understand what I am trying to say, but perhaps many others will. I am grateful that we know what is causing my symptoms and that there is a “cure”; things could be worse.


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