Necrosis. When I was 8, I was just a “normal” kid, playing football every day at school, at my football club, and at home (even if I got scolded for the latter one). I spent weekends with my cousins playing with the Nintendo 64, from collecting stars on Mario 64 to shooting spies and ennemies on 007 Golden Eye.
But one day, I started feeling a small pain in my right hip. Every step on my right leg was painful, and walking became very difficult. That’s when I began limping and my parents decided to bring me to a doctor. Unfortunately, the X-Ray didn’t show anything. The femoral head bone wasn’t irrigated with blood anymore, but it just hadn’t showed up yet.
For two months, I walked on this dead bone, limping and suffering. But you know what, it wasn’t even the worse.. Without any obvious injury, nor diagnosis, no one wanted to believe an 8 year old kid limping to « draw attention », and support another Munchausen syndrome. The psychological pain accumulated still resides in me today, and I find myself struggling to open up about any injuries or pain I may have.
I dont’t hold anyone accountable for not believing this 8 year old me, and I may have not believed him neither. The fact that in France you only pay a small fraction of your total medical bill doesn’t encourage hospitals to run the same tests in a span of two months. However, the pain was so strong that I got myself a second chance for another X-Ray.
I will never forget the day my dad brought me to the emergency room, on a hot summer night of June 2001. After a long consideration, the doctors finally accepted to check this hip again, and after more than three months of pain, they had a diagnosis. I knew it wasn’t a good one when I saw my Dad crying for the first time : it was a Legg-Calve-Perthes.
Legg-Calve-Perthes disease is a childhood condition that occurs when blood supply to the ball part (femoral head) of the hip joint is temporarily interrupted and the bone begins to die. It doesn’t have any known causes, but mostly affects young boys aged between 7 and 11.
Fragmentation. Hardly had the nurses found a room for me when psychologists started visiting. Using cartoons, and other analogies that kids can assimilate to, they tried to explain to me my condition, and how they had planned my recovery.
they mentioned something about walking with a new leg for a year or two..
First, they described the dead bone phenomenon, while emphasizing on the lack of causality, but I wasn’t listening much. I didn’t quite realize what it meant, I was just wondering if I could still go to holidays and visit my family in Tunisia this summer. So they kept talking, and I kept nodding..
Then they started explaining the hospitalization process, “Doctors need to keep you at least one month on a bed so your body can start absorbing the dead bone and forming a new one” Crap ! It means no holidays this year …
And last but not least they mentioned something about walking with a new leg for a year or two while the bone forms.. It sounded cool actually, until I really get to see it.
So I went on to spend two weeks in this general hospital, and another five weeks in a specialized center for orthopedic conditions. Not only did I get to see the craziest innovations, but I also got my own futuristic like tool : a third leg !
Doctors : “Once the new soft bone starts forming you must not walk on your right leg until another year or two (depending on the progress). Of course we won’t let you sit down for two years, so let’s get you a temporary leg, and you can even choose the color !”
Me : “I want it red”
Two weeks and a special training later, here I was with my fresh new Red metal leg.
Look at this swag ! Not a single day passed by without strangers stopping me in the street to ask what the hell was this. Random questions started fusing at school “Can you dribble past players faster now ?” or “How do you sleep now ? ” . And this lasted 18 months.
Reossification. I could write a book with all the anecdotes and memories I have while walking with this metal leg (like the time I broke it in Tunisia and had a fisherman repair it with octopus’ suckers), but it is not the point of this article.
After 18 months walking like Robocop, I finally got a good news that my new hip was ready, and I can walk again now ! So here I am, I finally remove this ugly red piece of metal (you get to hate it after a while I reckon), I am ready to walk .. And BIM BADABOUM ! Unsurprisingly, not only did I forget how to walk on my right leg, but I lost so much weight and power that I felt like walking with a chewing-gum leg. So step by step I learned how to walk again and harden the new soft bone created.
Healing. After the bone fully grew back, the shape of the ball continued to develop until I finished growing. I was cleared to do any sport I wanted again, and went straight back to playing football.
It was back to normal again ..
Again. Until two years ago. An unbearable pain reappeared around this right hip. My haunting nemesis was back.
At least now I was old enough to be taken seriously, especially with the medical record I have. So I went straight to the hospital in Singapore, where I started working after taking my Master. The orthopedist decided to start with an X-Ray. Once again, it failed me and didn’t show any problem around the hip. But I knew it wasn’t a usual pain, so I insisted to undergo an MRI.
Two days later, the MRI showed the bone didn’t develop into a perfect circle. This impacted the whole joint around it which provoked a labrum tear with time, and caused considerable inflammations.
This time I wasn’t just nodding and wondering if I could still go to holidays, but thinking about all the consequences in my day to day life to have constant inflammations and a recalcitrant hip. Back then, as a kid, I was an ovni and got all the attention in the world when I had pains, but as an adult, you are on your own … Even Doctors failed me. All of them gave me a different advise, which only frustrated me more and more. What are you supposed to do when even the specialists diverge.
Doctor 1 : “I think you should see an osteopath first, to strengthen the muscle around your hip and prevent the inflammations”
Me : “Okay let’s try this”
Nine sessions later, we only made things worse and aggravated the inflammations. My labrum tear isn’t a “usual” one, its cause is deeper.
Doctor 2: “Let’s perform an arthroscopic surgery to repair your torn labrum. I have an 80% success rate and most my patients can start running 3 weeks after the surgery”
Hmm a quick Googling around, and I noticed a lot of people face further pain after the surgery than before. Even Sir Andy Murray is still struggling with this, whereas he has access to the best medical facilities in the world ..
Followed then a dark period where I couldn’t trust the doctors nor couldn’t I live on painkillers all the time.
Bottom. On a scale from 1 to 10, the pain was constantly at 9. I was so hopeless I just started drinking heavily and partying all the time to forget about the pain. The hangovers were accompanied with even more pain, due to dancing all night long. It’s crazy how much impact being unhealthy can have on your morale, and I wouldn’t wish this even to my worse ennemi.
But I am grateful I have people around me, who gave me a good wake up slap. You can’t party to forget your ache until the rest of your life, you gotta find something that works, there must be a way. And they were right.
Resurrection. I opened up about my problems, and luckily I found someone whose son had exactly the same problem. She looked at my MRIs and lifestyle, compared to her son’s and came up with the best advises I could get.
She wasn’t a doctor, but you could tell that she learned and experienced a lot about this condition, when she was the first to dig deeper into the causes of the pain itself. Why now ? Why not 5 or 6 years ago ?
We brainstormed and I told her about my whole journey. And it actually coincided with my moving to Asia, where most food contains MSG. This gluten additive accentuates inflammations, especially around your hips ! How could I figure this out ? Definitely not alone. So I stopped eating anything with MSG. Same with dairy products.
Then, she noticed a huge posture imbalance due to a shorter right leg. This played a huge role in my inflammations, as I was putting 30% more weight on an injured hip. It propagated to the nerves, and consequently my back and my calf. You would be surprised how much impact a slight imbalance can have on all your body. So I made orthopedic insoles.
After 3 months of following this strict diet and walking with the new insoles, my life changed, again. Even if some positions still trigger the inflammations, it reduced the daily pain level from 9 to 4.
So I got another hip, and left my 9 to 6 job in finance to start from scratch in Music Industry …
Resilience. Don’t lose hope, don’t waste time and don’t make things worse because the future scares you. Spend time understanding your body. If you can’t do Sport X anymore, do sport Y and learn how to appreciate it. Less Sport for me meant picking up photography, starting a new project and my own company. It can be anything, but don’t let your condition get the best out of you.
It is a tough journey, and I feel for everyone who has to live with a constant physical pain. Mine isn’t the worse, but it almost got the better of me.
And you, how do you fight your pain ?