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Friday, May 25, 2018

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


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