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Saturday, June 23, 2018

When legs simply do not show up 9 – “The Fix 2”


Considering my physiology, the extent of the endofibrosis and the need to use my own vein as patch, my highly skilled surgeon worked out in detail how he will conduct the procedure to maximize our chances of a successful operation.
My lay understanding of the process was this:
  • Open the top of the upper limb and remove a spare vein that will be used as patch
  • Make an incision and cut through my abdominal muscles to access the inguinal ligament to release it (I have blogged about studies showing a tight inguinal ligament is often cited as a possible the culprit)
  • Open the groin area to access the external iliac artery, cut it open and conduct an endarterectomy (i.e. remove the endofibrosis from the lining of the artery)
  • Close the artery by patching it with the vein that was harvested from my upper limb
  • Close up and staple the skin together
Evidence?

Two gashes on the right side of my body making up 77 stitches overall as shown below.  This was obviously a major operation that requires time to recover - the best I can do is take it day by day.


"The evidence"

Saturday, June 16, 2018

When legs simply do not show up 8 - The Fix


I found the pre-operation procedure at hospital to be rather hectic. Once you are allocated a bed, you get surrounded by a whole host of healthcare professionals who ask you questions on your previous medical history, do final physical checks, draw blood, attach drips and also make you sign consent forms! I did not mind the buzz, it sort of got me too busy to think about what was ahead of me, and what felt like no time at all, I was given a magic pill to put me to sleep so I can be wheeled off to theatre.

Just checked in - anxiously waiting for the signal to get ready


The next I knew I was woken up and there was this massive pain on my stomach…. As if I my entire torso was on fire and the area felt so tight that I could not even talk.  Then my doctor checked whether I could hear him and then gave me the summary – the four-hour operation went very well, the vein that was removed from my leg to patch the artery was competent enough and was able to cover the wide area. He was very happy. There was no need to kick the Plan B that would have meant the use of artificial material – that made me very happy too.

But the pain was unbearable, at least for a few while - and then got better. The first night I did not sleep much – I kept on asking for more pain medication and I was getting only marginal relief. Because of this, I had to literally keep still but every time I dozed off, I was startled by the massive pain, because I kept on trying to change my position in my sleep. On Day 2, I was not psychologically ready to try and get out of bed – I was still traumatized from the pain but by mid-day it was under control. The odd thing is around the same time at midday I started to develop some “airlock” in my gastric system that was causing so much discomfort that I could not eat. It got worse overnight and so for the second night in a row I could not sleep because this airlock was causing extreme discomfort.

On the morning of Day 3, still heavily medicated, on liquid diet in high care, my physiotherapist came to help me get out of bed to do a few steps. I have heard a few people talk about how painful this process is but still I was not prepared for what I went through. She assured me the same afternoon we will try again and it will be better – and I thought those were only kind words of encouragement, nothing more. She could sense the horror and mostly the despair in my voice at the first attempt. That same afternoon she came and I was amazed by the great improvement and so literally 24 hours later, with more baby steps and effort, I was able to get on and off the bed on my own and was able to walk to the hospital coffee shop!

First steps after operation

I am walking very slowly with a severe limp – still on pain medication and still connected to machines that monitor me closely, but I think the worst is over, at least for this time around. My focus right now is on healing the right side and making sure that I am physically and mentally prepared for the next procedure. 

Monday, June 11, 2018

When legs simply do not show up 7 - "Help is coming"


I returned from the Netherlands armed with a diagnosis and two options to consider – to go back to the Netherlands to do the operations or to find a vascular surgeon in South Africa who could also do the procedure. I strongly believed even then, that there are vascular surgeons in South African that have come across my condition and that have assisted athletes with similar issues to mine. The procedure is pretty standard but the diagnosis IS the king. My first choice was a South African vascular surgeon because that meant the operation will be local and I would not have to fight a losing battle with medical insurance to get them to cover my costs. The other issue is that I would not be allowed to fly back home for about 3 weeks post operation – and that meant that I would be staying overseas without access to my close family at my most vulnerable time, not forgetting the high living costs that I will have to incur.

So my first task when I returned was to find a South African Vascular surgeon and my search had barely started when I came across one with the necessary knowledge and experience. It was by pure luck that I was referred to him; nothing I have read or come across online would have pointed me to him. He certainly was not amongst the doctors that received my last desperate appeal for assistance early in January.

The surgeon confirmed the diagnosis of external iliac artery endofibrosis using pre- and post-exercise Doppler and as part of his process, he wanted to do a catheter angiogram to help him plan the operations in detail. I had totally misunderstood what this particular angiogram actually entailed and it turns out I had to be under anaesthesia for the procedure. The angiogram did not tell me anything new, except to show that my endofibrosis was getting worse and that it would have reached occlusion in no time.

While I was at the hospital I met a lady that had just done the exact procedure as mine by the same doctor 2 days earlier and I was able to chat to her about her experience. We shared some common past experiences, for example, how we eventually got our proper diagnoses, the calf injuries that had impacted our sporting activities, etc. More importantly, chatting to her straight out of the operating room by the same doctor gave me a tangible reference for my own  confidence.

On 13 June 2018 I am checking into hospital for the first of the two external iliac artery operations and I am very nervous. The procedure is endarterectomy with vein patch - I am optimistic and I hope and pray that everything goes well. Help is coming and I am looking forward to getting my old life back.

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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