Stay Strong and Keep Moving - my Perthes Journey

David Bridgfoot – Australia, Sept, 2018

The early days

My Perthes story begins as a young child, in the same fashion as most other children around the World. I was healthy, active, eager and for all outward appearances, normal. Complaining of left leg and hip pain while walking to primary school to attend Grade 1, it became clear that wasn’t the case. I was taken to the Royal Childrens Hospital in Melbourne for a diagnosis and still have fond memories of the old hospital building now replaced by new modern wards.  My parents were no doubt shocked, like most who discover their child has a mysterious limp at such a young age. I also assume they were distressed and guilty, wondering what a previously healthy child of age 6, could possible have wrong that they could have avoided?

Diagnosis and Treatment

Taken for exploratory surgery, I was quickly diagnosed and scheduled for treatment. It was 1978 and my treatment involved having to be admitted to hospital and placed in traction. Heavy duty surgical tape wrapped around both legs from hip to toe and a medieval apparatus with weights suspended to keep the femoral head separated from the pressure of the body. During this period I was laid up in bed being fed and keeping myself entertained as young kids do, oblivious to the longer term potential implications of my condition. The biggest issue with this treatment was the pain of removing the tape! I recall it took days and akin to a painful, inch by inch, hair removal treatment.

Next came ambulatory containment, involving a broomstick plaster cast around both legs for a few months, again to position and protect the femoral head from impact and give it a chance to grow and form unhindered. The upside was I was discharged from hospital and back at school again happy being a kid, albeit in a wheelchair which I didn’t mind. During this time I was also taking calcium and other supplements to aid in bone re-growth which I cannot confirm had much effect.

Childhood Issues

The last stage was spent on crutches, free to race around the schoolyard and everywhere I could, just thankful to be independently mobile again. Importantly, my differences at school were never isolating for me, something I’m thankful to my teachers and parents for helping me through when so many others can have negative experiences. The period of treatments is also probably the most stressful time for parents, simply from having to constrain their child who won’t sit still and wants to be normally mobile like their classmates.

From my research, this long drawn-out period can also generate behavioural issues, such as ADHD and depression and my belief is these ailments, commonly diagnosed with Perthes children, are a symptom of the restlessness caused during this period, not a cause. I also think parents need to be mindful of potential learning disorders during this time, particularly the ability to focus because of pain or being excluded from class engagement.

All said and done, I consider myself lucky. My condition was caught early and the treatment was not very traumatising to go through, as much as it was for my parents and older sisters who always had to take me places in a wheelchair, much to their annoyance!  On removal of the plaster casts, I vividly recall having to learn to walk again and the muscle wastage that felt like I was disconnected from my legs, fortunately I recovered quickly and actually missed my daily wheelchair races!

Learnings, or Not

The experience of my parents in dealing with and learning how to manage the effects of a rare disease was one that did not foster them with confidence and assurance. From what they recall they weren’t told much on my release at all, other than I’d probably need a total hip replacement by age 30 and good luck. I came away mostly ignorant of the damage done and issues ahead, probably because I didn’t want to be any different as a child, that differences mean weakness, bullying, pity and isolation.

Sharing knowledge and first-hand learnings was probably an issue in the pre-internet 70’s for parents with children with rare diseases. I suspect many Perthes kids were simply sent on their way post treatment like me, without so much as scheduled checkup’s beyond the next year. I still see a lot of this today through my involvement in many online forums for Perthes parents and especially adult sufferers, and I commonly read about their frustrations with finding expertise and insights into what to do, from first diagnosis to adulthood.

Childhood to Adult Perthes – the legacy

Fast forward to age 40 and I’d had a very active life, neither myself or my parents really thinking of Perthes much. After all, it is typically known as a degenerative childhood hip disorder, not adult. In retrospect I understand I was viewed as ‘recovered’ or ‘healed’ as far as the medical profession could help with. Although my femoral head was flattened somewhat, it had stabilised and besides the limited ROM and a sometime noticeable limp, I was thankful that no surgical intervention was considered necessary or taken.

I’m a strong advocate for exercise and healthy leaving on my social media accounts. This stems from my life of laying most sports and taking part in many activities, including football, tennis, hockey, basketball, golf, running, hiking, swimming and gym. I love being active and benefitting from the positive physical and mental benefits sport brings, especially team sports. Luckily, I’d never had any real pains nor restrictions till then, but admittedly, as a child with an ‘issue’ I was never considered a candidate for great athletic success, besides having developed a very competitive nature and a love of sports.

I assume most of us typically keep involved in club level sports into middle age to try and keep fit and socialise and that was my focus. It was at this time that I suddenly experienced my first real issue with post-childhood Perthes – debilitating pain. Whilst walking the street during work hours I suddenly could not walk, while people stared blankly as though I had hurt my ankle and was putting on a show. This is one of the most frustrating aspects of Perthes for many, the fact it is an invisible disease and they often find themselves judged, ignored, dismissed or ridiculed. We appear like able bodied adults but when in pain, move like ageing out-patients with severe arthritis and many assume it’s an act (either for pity or false compensation).

I learnt then how ignorance is not bliss, nor was I proud of my lack of foresight, given the ominous advice my parents were given of a premature THR someday.

It seemed in my competitiveness I had pushed myself too far and forgotten my hip had a shelf life. I quickly had an MRI done on recommendation from a local GP who had just had a double hip replacement herself thanks to premature arthritic issues. She was not a great advocate for surgery nor optimistic for me but the scan didn’t show any real issues to the labrum, joint or area so I was left with few answers other than to stop what I was doing.

Awakenings

I immediately stopped any running, tennis or other high impact activity and worried about what future quality of life I faced. I wasn’t sorry for myself, rather worried if I was to be immobile, in pain or a premature member of the retired old hips brigade. It was a shocking awakening and then that my learning and desperation for answers began.

Knowing of the benefits exercise had preventing bone degeneration, I felt I had to quickly find what my remaining future options were. Should I stop completely I could become depressed, overweight and probably amplify the pain as the hip degenerated further, perversely from a very lack of exercise. I therefore thought ceasing exercise entirely could be a slippery slope to what I exactly wanted to avoid, surgery and a life of further limited choice. I resented having to make such drastic, unprepared changes to my lifestyle but I also knew hip technology would not support my preferred options either.

To make matters seem worse, should my pain increase, I was likely to be considered too young for surgery, in which case I was destined to spend years in no-mans land. Insultingly for many who’s hips have begun to fail, as they’d been led to believe they unavoidably would, some are considered not disabled enough and cannot claim benefits available to others in the health system.  In pain and spiralling health, too young to have the hip operated on, too old to rectify the problem, the options seemed bleak.

The problem

Perthes kids without the skills or encouragement to develop appropriate exercise and diet habits will probably encounter life-altering problems in adulthood. For every person I encounter today who is ‘healed’ I find many more others who are suffering still, some for decades and seemingly unable to do much at all but live with the pain, at significant cost to their livelihood and the health system.  It has also recently been determined that prolonged opioid use, up to and before surgery results in poor patient outcomes. Surely then we should be looking to avoid this?

We obviously need to fund more research and raise more awareness of all these issues. It’s still too common that people get busy with living, families and work and like me, they eventually find their hip starts to degrade quickly without warning, as early as age 18 for some. Many leave any chance for intervention too late and are forced onto pain medication, awaiting surgery which many Doctors are unwilling to perform, even though they are in constant pain. Others are afraid to try alternative approaches such as exercise because of the perceived (and sometimes real) risks. I read about these stories weekly on online forums and it frustrates me as I see it as a missed opportunity to regain their lives without surgery.

I appreciate there is a spectrum of severity with Perthes and therefore recovery. Many high profile ex sufferers have emerged healthy and are proactive advocates for the disease, such as Cameron Mathison, Earl Cole, Bill Shannon to name a few. Others, typically athletes, often appear in the media to demonstrate that there can be a future post Perthes, but is this a common or expected occurrence?  I wonder what role their diet and genetics have played in their recovery while others are destined to a life of suffering?

I don’t know the statistics but it would be good to gather more data to determine how many kids recover and how many go on to experience other issues.  If we know we can estimate how big of an issue adult Perthes is and why it impacts some and not others, we can begin to minimise the issues we go through by providing better life-long diet and health management regimes. This of course, assumes they are not at the mercy of hereditary issues such as rheumatoid arthritis or other undiagnosed issues, or complications from childhood surgery.

Counter-intuition

3 years on after my ‘Revenge of the Perthes’ incident, I found myself restricted to boring gym sessions with no real end goals so I needed to explore further ways to keep active. It was my wife who came up with the idea to look into Crossfit, after seeing a ‘box’ one day bustling with frenzied high intensity activities of the most challenging type.

It looked challenging and I asked myself.. could or should I try gymnastics? Maybe. Running? Probably not, Olympic lifting, definitely not appropriate..?

It seemed like a risky choice to me but experimenting with this new competitive sport and trying a new and varied range of exercises appealed to my curious and competitive nature. At the very least it was potentially one way to reverse bone decline through a range of weight bearing exercises I might have typically never tried. So with some pain still I jumped in and started classes.

Within the first two weeks my pain had stopped completely.

I still occasionally do swimming, yoga, cycling and other low impact exercise options ,which is what most Doctors would prescribe, but it seemed like we had found an immediate ‘cure’ and a way forward to less decline, so I committed to this regime. After some online research I only identified of a handful or people with Perthes (pre or post THR) working out this way and fewer posting about it, so I decided to use myself as a guinea pig for all to share.

Caveat Emptor

After this encouraging start I admit I’d again pushed the limits of my capabilities. I encountered some severe restrictions through certain ranges of movement after my attempt at the 2017 Crossfit Open. I placed 12th in Australia in my scaled 45-49 age group but I suffered.

On seeing a local specialist Orthopaedic surgeon for the issue, I was told “there is no treatment, it’s typical degradation from age and arthritic symptoms, so stop playing impact sports and minimise the damage until it’s your turn for a THR”. In desperation, I further asked if there was any chance of rehab, but the analogy given was, should I continue with HIIT, I was slamming an uneven door shut into a frame repeatedly, which would result in destruction of the joint.

Taking on board his advice, I have been on a slow careful recovery to ‘normality’ since. After adapting some movements and minimising some of the extreme elements, I’m about 80% of the way there but conscious of the potential degradation in the joint occurring regardless of my diet or fitness approaches.

The Results and The Future

3 years later, at age 46, the results of my current approach are mixed but mostly encouraging. Most importantly, I’m pain free. I’m the fittest I’ve ever been but admittedly with some ROM limitations. I have much better muscle function and power and i’m still able to perform high intensity training 6 times a week. Others may achieve better functional outcomes from lower impact options but there’s such a general lack of awareness of how physical activity can help, rather how it just causes pain, it’s key the reason I encourage others to try.

Have I paid a price for pursuing a high intensity exercise regime? Yes, but that’s the case for all active people. Should I include Yoga, Pilates, and more a holistic approach to managing my hip? Yes, and I do but could do more. My logic is, if I’m to have a THR, then I’ll have it on my terms. Every year I’m healthy and mobile beyond 30 is a bonus and currently I’m living proof that there is another way than medication and surgery, further encouraged by the increasing evidence to support weight bearing workouts are critical in preventing ‘osteo’ issues into later life.

The big questions are, how much longer have I to go before my hip fails me and should other Perthes suffers adopt this approach? That I am not sure. For myself, I may last till 50 or 60, but it will be pain free and I’ll have absorbed a host of other benefits from what i’ve adopted into my lifestyle – from an anti-inflammatory diet to better physical awareness to mental wellbeing. Further, if the average age for a THR in able bodied people is 65 and that’s when I join them, then that’s a win in my book.

I understand the longest hip replacement in history has lasted 70 years for one man, proving it’s not the end of your fitness journey to have a THR, but many Doctors (and my own family) struggle to understand why I don’t want to just have it done. The answer is simple, unless my quality of life is suffering and I cannot pursue these alternatives, then I should, must, seek other alternatives – there is simply too much else at risk, namely my total lifespan and mental wellbeing.

I’ve set out to record my journey via social media, using my Instagram account called

@adaptiveatheletedownunder’.  In it I explore my response to exercise, diet and share learnings to help fill the void of Perthe’s knowledge and contribute my own insights.  My aims are simple. Can I demonstrate how physical activity has direct benefits on adults who suffered Perthes in childhood and can I delay my potential decline into immobility and surgery? My experience tells me, yes it can while for others, less intensive approaches may still benefit them. It really looks like a strong case of ‘move it or lose it’.

Footnote: Seeking Causes

In discovering widespread and desperate suffering online, I’m driven to seek new insights and try to help other adults in my position. I’m also trying to educate parents of what the future might hold for their kids. My online approach seemed the best way to motivate myself and make a difference. Its also therapeutic to engage with others on the same journey who understand the issues first hand.

During my online research, I identified three potential causes for my condition, as far as the trio of multi-national surgeons Legg, Calves and Perthes could not agree they may be. I experienced the physical trauma of a broken left leg as an inquisitive baby at crawling age, the result of pulling a large Rank Arena TV on top of myself. My Mother was also exposed to second hand smoke, all too common in the 70’s, and third, my grandfather had rheumatoid arthritis from his 40’s.  Any of these may have been a factor for me, but none are definitive, so I’m now committed to a journey of discovery, to find out as much about this insidious disease as possible.

I am mot medically trained so I try not to offer advice online, I only share what works for me in the hope it may benefit others. I’m also motivated by the realisation that I am not going to go through the pain without the rewards, particularly considering that in over a century after its identification, we are little closer to understanding its causes. Since the early 1900’s more theories have emerged, none conclusive but some intriguing and worth researching. I am also surprised there is no real debate about the role of genes vs environment, with the former down-played in many medical research articles, even though in other species it has been identified as hereditary and a lot of anecdotal evidence seems to point the same way for humans.

Interestingly, I recently began to explore the reasons for the very high (1 in 3,500) incidence of Perthes in the Faroe (sheep) Islands, located in the middle of the Norwegian sea. That’s 25% higher then the next largest incidence studied to date in Liverpool, UK and much higher than most other locations. I have a theory about why but I’ll need help to prove it. It may actually be only one cause of Perthes, as there are multiple categories and causes of diabetes, but if we don’t explore such obvious outliers, we’ll never advance our understanding of whether it is dietary, environmental, geographical (Vit D exposure), genetic (hyperactivity, hypertension, insulin growth factors) etc.

As just one person who is coping well, I can only hope we will find a cause and a cure soon especially for those suffering much worse than I, till then ‘Stay Strong and Keep Moving’ is my motto!

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