More Trouble Ahead
Part I of my journey was all about my cancer year; the year from the diagnosis with an osteosarcoma through the major surgery to remove almost all of my tibia and replace it with an endoprosthesis to the end of the chemotherapy.
Part II was all about my road to recovery; several inter-connected journeys that allowed me to get fit again and regain confidence in what I can physically do. During this time I had spent longer stretches in the United States of America, in South Africa and in Uganda.
A Very Stubborn Infection
I had just returned from Uganda, where I had spent the previous three years and a bit. Over the course of time, my endoprosthesis was causing me trouble. It seemed as if the main bolt - or the housing in which it runs - was worn out. A bit like an old door hinge that has too much clearance. And as this was the main moving part on which the artificial knee depended, it made walking increasingly harder, more and more exhausting and from time to time painful.
So after my return from east Africa the idea was to quickly get it fixed and then move to London to take up a new job in a vibrant conflict transformation and peacebuilding organisation. The surgery went well, so it seemed. But healing took longer than expected. However at that time that was nothing I was too concerned about. And after a couple of weeks it seemed all set. So I started my new life in the UK. A life in a new city with a new job and new responsibilities.
This new job brought me regularly back to Uganda. On one of the first of these business trips, I noticed a swelling just below where my patella would be (if the endoprosthesis had one, that is). And it grew larger by the day. Not good, not good at all! It seemed I had caught an infection. Something I had always been warned about. While normally an infection can be successfully treated with ordinary antibiotics, it would be much harder in my case, so I was told. Due to the large metal implant and the severely restricted circulation after the main surgery, it would be much more difficult to treat me. And the chances of actually getting on top of an infection would be much smaller.
A visit to the surgery in Kampala confirmed my suspicions. The boil was full of pus and in order to prevent it from bursting, we decided to drain it right then and there. I was given instructions on how to clean and treat the wound, I was prescribed some antibiotics and then I headed for a coffee place to decide what to do next.
By that time I had the endoprosthesis for about 17 years. Remembering the words from the orthopaedic consultant from back in 1987 - „it‘s likely to last anywhere between five and fifteen years“ - I became aware of the fact that my metal knee might have reached its shelf life. In addition I had developed a mindset of not allowing my endoprosthesis to limit me when not really necessary. So - okay, now I already see some of you shaking your heads in disbelief about what‘s about to come - I decided to continue my journey and take care of the leg once I am back in the UK.
Two days later I moved on, travelled from the capital up to the north of the country and a few days later on to southern Sudan. I tried to keep the wound as clean as possible. But obviously there are limits to doing so while being on the road in a tropical country during the dry season, mainly using public transport, mostly in rural areas and often without access to clean water or a basic health infrastructure. But somehow it felt right.
Back in the UK, the National Health Service wasn‘t much of a help. My doctor initially thought a few anti-inflammatory pills should do the job. Well, they didn‘t. I decided to go back to Germany to get a proper assessment of the situation as well as start the treatment. Over the coming months there was a lot of to and from between the UK and Germany, trying various ways to get on top of the bacterial onslaught, so to speak. While the initial round of antibiotics seemed to bring the infection down, it didn‘t manage to stop it. So in the end we opted for yet another surgery during which the antibiotics were placed right at the epicentre of the infection. However while this initially seemed to work, the problem was back soon.
Assessing My Options
After some time I was just fed up with the situation, with the ups and downs and with the fact that my life seemed to be limited to going to work, coming home to rest - I constantly felt exhausted - and spending my spare time in one medical facility or another. That needed to change.
The organisation I was working with at the time was very supportive. Taking the leave I needed to focus on my leg wasn‘t a problem. I dedicated a few full days to research on the internet to learn more about the options I had. After a few days my understanding was that I basically had four possible alternatives. Somewhat simplified they were:
No.1: Keep the infection reined in with antibiotics and otherwise do nothing for the time being.
No. 2: Have the metal implant removed, keep the leg for three months in an external fixator while the leg is flushed with antibiotics. Then put in a new metal implant, but this time losing the knee joint and anchoring the implant higher into the femur. Having another three months for healing in which I would not be able to put any weight on the new implant. Then hoping that the infection has been beaten - the chances, I was told, were roughly 70/30 - and starting a life with a stiff leg. And still with a metal implant in my body which would be susceptible to the very problem I just tried to solve. If the infection were still active or coming back, I would then have it higher up in the femur, potentially resulting in an amputation with a very short residual limb.
No. 3: This one is called a rotation plasty. Basically you amputate the leg above the knee. And you also amputate the foot. You then connect your foot to the upper limb, but with the toes pointing to the back. Yes, it looks a bit unusual. But it has the immense advantage that over time you can learn to stretch the foot more and more, so that the toes are increasingly pointing downwards. And with a bit of practice and a lower leg prosthesis you can then use your former ankle as your new knee. In many ways a better option than an above-the-knee amputation, as you have active control over your knee joint. But not always possible.
No. 4: The good ol‘ fashioned above-the-knee amputation. The idea was that the loss of the leg in combination with antibiotics would deal with the infection. As no new metal implant is needed, the risks of similar problems in the future would be minimal. Developments in the field of modern prosthetics since the late 1990s have been significant and allowed amputees to live a normal live and be able to engage in an active lifestyle.
So much for my understanding from the internet research. What followed was a period in which I met up with various doctors, amputees, physiotherapists etc. to learn more about the options I had and see which one might be best for me. I was set on making my own decision. And for me that meant making an informed decision.
My approach was to go about it from the expected end-result. I developed a pretty clear picture of how I wanted to live my life five, ten years down the line. I was clear that I wanted to live independently and be able to work and earn my own living. I didn‘t want to depend on regular medical treatments or being on drugs for years. I wanted to be physically active and engage in sports I like. I wanted to develop the confidence to try out new things without being held back by worries about my health. I wanted to travel far and wide and off the beaten track. Those were my leading lights.
This clarity about how I wanted to live my life was key to making my decision. It instantly narrowed my options down to two: No. 3 and No. 4. And after an additional consultation with a specialist for the rotation plasty, it soon became obvious that due to my medical history the rotation plasty was not a viable option. That left me with an above-the-knee amputation.
Finding An Experienced Team You Trust
During this process I often felt incredibly frustrated. Hardly any medical personnel I spoke to was willing to approach the process based on my vision for my future; that is being able to live an active lifestyle without the constant worry about having access to a high quality health infrastructure. For almost all of them, the highest priority was keeping the leg. Whether I would be able to use it properly afterwards and live an active and independent life seemed less important.
At the same time I was incredibly lucky to stumble across an article about a small clinic in Bavaria which had specialised in amputations. Their concept was simple: Provide everything a potential amputee might need under one roof. So in addition to being very experienced with the actual amputations, the clinic offers specialised rehabilitation for amputees from a very early stage onwards. Furthermore they cooperate with a team of highly experienced orthotists and prosthetists that accompany the patients in their journey from the first diagnostic/interims socket through to the final prosthesis. A one-stop-shop really. And as far as I know the only one of its kind in central Europe.
Dr. Haas, the director of the clinic, is an above-the-knee amputee himself and used to be part of the German Paralympic Skiing team. When I approached him with my questions, he was not only willing to answer all of them in detail, he also pointed out additional issues I needed to think about. He explained the pros and cons of various medical procedures, gave me an overview of what prosthetic equipment is available through the German health service and offered to connect me to other patients, physiotherapists and prosthetists. He strongly encouraged me to talk to them, get additional opinions and then make an informed decision. Just what I needed.
From my original telephone conversation with Dr. Haas onwards things went very quickly. I visited the clinic, I spoke to other amputees, some of them very happy with how things go, others still struggling with their new situation. I met up with physiotherapists and saw how good they were at getting people up and walking again. And I saw some of the then new high-tech prostheses in action. Within days I had made up my mind. For me an amputation, followed by intense rehabilitation was the best way forward.
A week later I checked in, had the leg amputated, was off the painkillers three days later and celebrated my 34th birthday the following week. The amputation has been a starting point for a new phase in my life. And while I had my ups and downs, I have never regretted the decision to amputate. Not a single day.
Post by Bjoern Eser, the creator of The Active Amputee