Monday, May 31, 2010

How I Got the Way I Did - Part two

Part 2.

Pain is indeed a motivator. It’s not, however, the most reliable guide to life decisions. I wanted to find solutions for my own feet problems. What I actually got, however, was both less and more than I thought I would be getting.

I did eventually find a teacher, and found myself introduced to the science of biomechanics. I seemed to take to the concepts like a duck to water, and eventually found myself working for the California College of Podiatric Medicine, running their Mechanical Orthopedics Laboratory, where I learned to make foot orthosis, broadening my repertoire from footwear only. I began to audit all the classes offered in biomechanics, and eventually was asked to attend rounds in the college’s hospital and clinic. I became adept at gait analysis, and found my specialty in the area of limb-length discrepancy. After three years with the college, I launched my own orthotic lab, still making and modifying shoes, as well. I ran the lab for seven years, then sold to another lab, working for them for the next five. During that time, I founded a national laboratory association that still exists today. I also was asked by one of my biomechanics mentors to contribute several chapters to a new biomechanics text book.

I did go on to write two chapters – one on footwear modification, and the other on BK (below the knee) orthotic devices. The textbook is called Clinical Biomechanics of the Lower Extremity, Valmassy, Ed., Mosby, pub. During this same period, I had a unique opportunity to travel and lecture to a variety of medical schools in the US, Canada, and the UK.

It was also in this period I met the inventor of a new technology. Using computer-aided CAD-CAM milling technologies, a laser imager to image the foot, and a custom computer program, Alex Shang, the inventor, gave me another opportunity – to be the first to actually use the technology in real production settings. I went on to develop a training manual and training program that I later delivered to many other orthotic labs around the country.

Eventually, I became a little burned out. I had been working long days and long hours for many years, helping many people live better, less painful lives. During the period I ran my own lab, it was quite common for me to work 6 and sometimes 7 days a week, and often fifteen or more hours a day, especially in the first four years until I could afford to hire my first employee.

Finally, I decided it was time for a change. I went back to school to get a certificate in training, and through a number of stumbles, eventually ended up in the field of high tech. And after the bubble burst, I had to reinvent myself again.

After all that, one thing stood out for me personally. I had been very good helping make other people’s feet easier to walk on. I reduced pain, saved diabetic feet, cushioned arthritic feet, on and on. But the one thing I failed to accomplish, at least to the degree I had desired to, was to remove the pain from my own feet. This was because, I believe, club feet cannot be approached like other foot maladies. Their pathomechanic structure and function is not well addressed by regular biomechanical approaches. Eventually, I was forced to admit I would have some change, just not all the change I desired. It was at that point of understanding I eventually came to learn a very important lesson.

Post-club feet, regardless of the various solutions applied, just do not have the structural and functional ability to do what anyone else can do. They tire more easily. They often swell, and are often in pain. What this tells me is quite simple, but also quite disappointing. I have limits. And, the more I respect those limits, the less pain I experience. But this has been a very hard reality for me to adjust to, though now, in my late fifties, I can use the partial excuse that age is now a factor. Not completely satisfying, but it will have to do.

So, I hope this somewhat explains my perspective. But before ending this rant, I want to go back to the point I hinted at in the first section – in the first paragraph, actually. That is, being alienated from my own feet.

Club feet are, in my experience, a somewhat “hidden” malady. I would compare it, at least in my adult years, as akin to the experience suffered by those with epilepsy. Not with the actual disorder, mind you, but with the somewhat invisible quality it presents. People may not know you have it until it reveals itself during a seizure episode. Just as people may not know I have club feet, until I appear before them limping, or have to beg off an invitation to go on that ten mile hike they’d been wanting to do with me for some time. It is at those moments when I find I have to make a decision. Its not that I am ashamed about my condition, not at all.

It’s that I am tired of explaining it. These feet have taken far too much mind-share over the years. There are many times when I am lost in some activity, only to have all my attention rudely redirected back down toward the ground. And having to explain why that is, is exhausting. As a child and a youth, I was never able to NOT think about these tired, twisted doggies. And as an adult, I have spent most of my life focused on feet, other’s, certainly, but also my own.

So it is not all that surprising I am often puzzled, looking down, to see some things attached to my legs. Some things I have trouble owning. Until, that is, one day about five years ago. I was, as not unusually, awake around two or three AM, my wife asleep. I have been an insomniac, mostly due to my chronic pain, for years. But on this occasion, something happened I could have never anticipated.

I got up to make a cup of tea. Sitting in the kitchen, I looked down at my feet, and suddenly, like a bolt of lightening, I saw my feet in a completely new light. I saw them as a gift. Despite all I have experienced because of these feet, they put me in the way of many people I would otherwise never have met. They had led me to the opportunity to help others with their own obstructions. They had taught me about the true diversity of the human species. They had caused me to seek knowledge I would otherwise have completely ignored.

They have, in effect, taken me on a very interesting life journey, and that, more than anything, make them a gift I am only just learning to fully appreciate. Back in the podiatry college, there was a gross joke told about the purpose of feet. (Medical students are quite famous for their disgusting jokes.) It seems that the true purpose of human feet is to merely keep your ankles from fraying. And that was essentially how I viewed them for much of my life.

But the real purpose of feet, I know now, is to allow us to walk through our lives, and to put us in the way of others who will change us, support us, and whom we, in turn, can change and support. And the pain is merely the motivator.

How I Got The Way I Did - Part One

I think its time I set down my own story of life with club feet. I will include all the various things I’ve done to alleviate my pain and discomfort – those that worked, and those that did not – along with the actual history, warts and all. I have decided to do this because of one thing. All my life, until quite recently, with the discovery of discussion groups on the Web, I have felt quite alone with this, what is actually more common than most of us know, my twisted, painful feet, that started as cudgels ( a synonym for clubs), and are only recently become “my feet.” For the longest time, I would look at my screaming dogs, and felt they were somehow not mine, somehow just strange apparatus’ attached to my legs. I will come back to this point a bit later.

I started as all members of Club Foot started: our parents stunned, poorly informed, worried sick their child would live as a cripple. I had all the usual surgeries and therapies: tendo-Achilles lengthening; anterior tibialis lateral transfers; V-osteotomies of the navicular, b/l; a later procedure on the left to remove a cyst that had grown over the transferred tibialis, that resulted in a ruptured tensor-retinaculum ( a fascial band that holds the tibialis close to the foot, and serves as a fulcrum around which the tibialis can pull up, or dorsiflex, the forefoot) which resulted in a very visible, and tight as a bow-string, tibialis that stuck out and rubbed against the inside of the tongue of my shoe to this very day.

As for the therapies: serial casting, which may have been the Ponsetti method, given the nature and the time at which it was done (early to mid-50’s), (I still have one of those casts today, that I kicked off in my infant urge to run, I suppose); night splints – Dennis Browns, then later, metal uprights with a calf band, to which were attached tight elastic straps that were attached at the other end to the front edges of the shoes I had to wear. These were a wonderful form of torture – they had solid steel bottoms – so that if I arose at night to go to the bathroom, I was basically Frankenstein waking the entire house with my clanking.

And then, of course, the day-time braces. As if the severely brown, lace-up, round-toed “Bozo Boots” weren’t enough fodder for the constantly applied humiliations enacted against me by the other kids at school, the braces really kicked all that hell up about a dozen notches. Especially the twister straps. These were inch-wide elastic bands, attached at one end to the outside toes of my shoes, then wound around my legs (under my pants) to finally arrive at and attach to a – I’m not exaggerating – girdle. You try going into the locker room to change for gym class without anyone noticing that.

There were others, I won’t bore those of you who’ve been there further with this. But the emotional impact of all this was equal to the physical torture, if not worse. I’ve been in therapy a very long time. I even had several episodes where I was beaten unconscious by schoolmates because a teacher had insisted I be included in a baseball game during recess. No, I am not exaggerating. It seems my final offense, besides being the cripple who no one wanted on their teams, was to miss catching a fly ball from third base that went, in fact, well over second base. Its always handy to have a rational explanation for these things.

Until I was 16, I went to the Detroit Orthopedic Clinic for the castings, bracing, physical therapy, and, to be put on parade. The DOC was a United Way supported clinic for all kinds of orthopedic problems, and served primarily those in the lower levels of the socio-economic layers of our great society. Included in this mix were children and adults whose deformities and afflictions were so severe at birth they had been institutionalized immediately after birth. I grew up surrounded by the single most diverse population of human beings to be found anywhere on Earth. Every color, every age, and every genetic and injury-scarred possibility of the human experience served as my earliest lessons in who we all are in this world, and it wasn’t what my siblings and schoolmates, and even my own parents believed it to be. It set me off on a path none of my family could understand, let alone follow. I could actually write a book about that place, and may do so eventually, but not here.

And until I was 16, every single pair of shoes I was allowed to wear were brown, round-toed, lace-up, Bozo boots. I hated them. But from 16 till about 22 years of age, I was on my own. Shoe stores terrified me, because finding anything to fit was nearly impossible. Until I learned about Swiss-made hiking boots. Which were strong enough to support my feet. And which were, you guessed it, round-toed, lace-up, high-top Bozo boots. I would buy those old style leather Dr. Scholls arch supports – two or three at a time – and stuff those into the boots, and then stuff my feet into them. I often added ace-wraps for those really special times.

By that I mean, the times I did really stupid things to prove I was “normal.” Let’s see, where to start? Well, I walked to the bottom of the Grand Canyon and back with a forty-pound pack on my back. I had to be carried the last four hundred feet, and was unable to walk at all for nearly a week. But who cares – I did it! And there was the time I walked the entire Lost Coast of California, all 47 miles of it – alone (ill advised even for the strongest hiker) – and took ten days rather than the advised four to five, because on the third day, I slipped crossing a early spring rain-swollen creek and sprained the holy hell out of my left foot. You see, I didn’t really believe the people who told me this wasn’t the best season for such a trek, as the King’s Range, the mountain range to my immediate east as I walked south along the beaches and bluffs, was very full of snow, all in the process of melting quite rapidly. You see what being a stubborn SOB will get you?

There was much more of this kind of insanity, and is largely to blame for much of the subsequent joint deterioration I went on to experience in the following years. I was intent on showing the world (like the world was actually looking!) that I could do what anyone else could do. The problem was, I really couldn’t, not without some fairly serious results. So, finally convinced I needed to find some solutions for my pain, I hatched my brilliant plan. I would become a – yeah – shoemaker. By the late 20th Century, there were fewer than 100 bespoke shoemakers left in the US. This was compared to the start of the 20th Century, when there were literally thousands of them, both in factories, and in the down towns and village squares of most communities in the country. So, as you can see, I was planning for a truly bright future. My career path was now set in, well, quicksand. It took me four years of looking for a teacher before I realized I needed a plan B. So I took another year to find and convince a cobbler (a shoe repair guy) to take me on as an apprentice. While others my age were moving ever closer to the computer era, I was moving backwards in time. But, at least it was a plan.

End of Part 1

Que sera, sera - The Future's (Almost) Ours to See

I recently recieved an email from another c/f adult where, among other questions, was asked, "What loss of mobility am I likely to face?" I thought I would share a part of my response, because I think it applies to pretty much all of us in Club Foot.

Unfortunately, loss of mobility is almost a given with our feet. There seem to be some contrary rationale for this, but both support my own theory that leads me to call our problem post-club feet. There is one school that believes the very act of encasing our young feet in castings and bracings is in fact the contributor to our later pain and loss of joint mobility. The other school does not agree with this theory, but fails to produce their own theory. So here we are. I tend to side more with the first theory. If you have ever heard of the Chinese practice (long abandoned now) of foot binding, you will see the logic of this theory. I had the opportunity to make a pair of shoes for a 97 y/o Chinese woman whose feet were bound as a child. Not only were the feet badly deformed, they also had almost no motion in them at all. We, to a lesser degree of course, had our feet bound, and during some of our most critical bone development phases. This is one of the
contributing factors in most of us c/f-ers having smaller feet than other people our same size. It also explains our "tiny calves."

There are a few other things you can do to "cheat" these oncoming issues, however. The addition of rocker soles to your shoes is one of the best. Rocker soles do several things at once: they reduce the amount of actual joint motion needed to walk or run, as the rocker itself provides more of the motion required. They also provide a more accurate moment of propulsion as that phase of the gait cycle requires. When we have reduced motion in the rear foot, it can produce a delay of the propulsive phase (AKA heel off) which puts greater stress on the rear and midfoot. Additionally, rocker soles reduce impact at heel strike, which can save substantial wear and tear on the ankles and knees.

It is very important to also keep your knees in good shape. Doing balanced muscle building of your upper and lower legs, anterior/posterior, and lateral/medial groups is critical. We c/f-ers are far more vulnerable than others to loss of knee cartilage and meniscus tears, not to mention ligament problems. By keeping these muscle groups strong and balanced, that is, working all groups equally, will make a substantial difference as you age.

To add to my original reply, I'll start with a few questions for you folks. At what age did you first start to experience chronic pain in your foot/feet? Were you then or are you now above your ideal body weight? And, what have doctors told you about your pain - how to deal with it, whether they recommend a surgery, and if so, what kind, and of course, whether this was going to be an on-going issue for you?

These questions deal with several issues we are facing: the age/weight factor may in fact tell you something about the pace of future breakdown, loss of mobility, sequelae ( a medical term for what else may go wrong as a result of the first thing or things that went wrong.) Then there is the issue of what the doctors actually know, or think they know, about what c/f-ers face in their future. Weight is, in fact, an issue, and we c/f-ers are in a damned if we do, damned if we don't situation, I am sorry to say. If we excersize right, we produce more wear and tear on the joints in our feet, which may lead to more chronic pain, which will, of course, be a really big de-motivator. And if we don't, if we take it easy, we also have to become very watchful of our caloric intake, or we gain weight. So, unlike those without post-club feet, we have to work harder, be more conscious of our actions, or we will merely add to the burden our feet already have to carry, which will only accelerate the eventual reduction in mobility, and chronic pain issues.

As to what the doctors tell you: if they are all saying "triple arthrodesis" or fusion, you need to push back. This is a poor solution. Yes, your foot pain will reduce, and may even stop - for a few years. But here's the kicker - a triple ensures that your ankles will begin to break down within five to ten years, and your knees will either keep the same schedule, or follow shortly after. So you will be trading one set of problems for another, or even several others. Fusions are irreversible. If we push back, if we begin to challenge this "conventional wisdom," the doctors will have to start thinking more creatively about alternate solutions. Yes, there are ankle and knee replacements, but those have a shorter life than you might imagine, especially for us c/f=ers - our biomechanics are quite different from everyone else's. Where someone who has a knee replacement due to their sports career, for example, they are told to expect ten to fifteen years of use. I would cut that, at best, in half for us.

So, I don't have any ideas about better surgical solutions for post-club feet. That, after all, is not my job - I'm not a surgeon. But I will shake the cages of the surgeons, because present solutions just aren't good enough, and in some situations, aren't good at all. My area is in applying mechanical solutions (or, it was, as I am no longer active, except as a consultant.) But it is also in trying, for the first time, to get the truth about talipes into the hands of all you other post-club foot folks out there.

And one more question: what has worked for you? What footwear, orthosis, pain alleviation techniques, etc., what has enabled you to proceed with as little pain and loss of mobility as you have? Please share it here. This isn't "my" blog - it belongs to all who spend their lives at Club Foot.

Friday, May 28, 2010

Why "Plantigrade" is a Failed Measure of Success

In every case of a child with club feet, the primary goal is to get the feet/foot plantigrade. That is, to get the sole of the foot on the ground. While there are many therapies and surgeries employed to that end, it is plantigrade that remains the goal.

On its face, this can seem like a logical and desirable goal. It has the effect of making the child's feet look like anyone else's feet. It makes it possible for the child to wear somewhat normal footwear. And, to be frank, the feet just look better that way.

But as a measure of success of all the surgeries and therapies? In a word, no. Let me explain.

How something looks is not necessarily how that same thing properly functions. Nowhere is this more true than in human biomechanics. Each bone, joint, muscle, tendon, ligament, fascial band, nerves and blood supply that enable and nourish those same structures, all are designed to work in specific ways that support adjacent structures, that is, parts above and below any given joint, to, in concert, allow effective, minimally energy intensive gait. Or, simply put, all the parts need to work in a particular way to allow normal walking, running, or other physical activities.

From the start, the club foot alters this desired relationship, creating what is known as pathomechanics - biomechanical relationships that create pathology, or trauma. One dictionary states trauma is " A serious injury or shock to the body, as from violence or an accident." However, trauma also results from slow, repetitive pathomechanical "insult" to the body, or parts of the body, that eventually becomes a serious situation for the body to manage.

Getting the foot merely plantigrade, with little or no consideration for the function of the subtalar (rearfoot) and mid-tarsal (mid foot) joints leads, almost inevitably, to trauma for the adult with post-club feet. This is because the subtalar joint, in particular, is critical to all the joints proximal, or above that joint, as it is the only joint in the body capable of supplying motion in all three planes of motion. It allows the leg above it, and the pelvis and torso by extension, to rotate on the foot as the foot is fully weight bearing against the ground. Without this function, the rotational forces would cause the ankle, knee, and hip joints to try to supply that rotation, which none of those joints are designed to supply. This, inevitably, leads to trauma in those other joints.

But it is not merely joints proximal to the subtalar that suffer - it is the subtalar joint itself. If there is inadequate range of motion in the subtalar joint, that joint itself suffered trauma. And over time, the joint becomes painful and eventually, develops osteo-arthritis as well as loss of cartilage, which in turn causes more pain, more inflammation, further breakdown, all in an endless cycle. And the only solution the orthopedists seem to have is to do a triple arthodesis - a fusion of the subtalar and midtarsal joint interface to prevent all that painful motion from occuring. The problem with that is, well, remember all those proximal joints? That cannot supply rotational motion? They are now forced to try and supply such motion. Which, as already noted, causes trauma to THOSE joints, and now your problem isn't just in your feet, its in your ankles, knees, hips, lower, mid, and upper back. Get the picture?

It is beyond time for the surgeons to step back from their techniques and look seriously at how they can improve the picture for the subtalar joint when doing club foot alterations. It may be, for example, that they should consider holding off on some of the surgeries until the child's skeletal structure, especially in the foot, is more fully formed, which would allow better assessment of the subtalar joint's condition - its range of motion pre-surgically, its joint surface congruency, its ability or inability to manage the repositioning of the foot with proper ligamentous and muscular opposition. And, if they spend the time to look at adults with post-club feet, who are, sadly, a walking (or limping) laboratory of the outcomes of prior surgical techniques, they may just come up with many more ideas than these.

The bottom line is simply this - the measure of success for club foot intervention must cease to be merely plantigrade. It must instead become a full assessment of the resultant biomechanical integrity of the child's foot or feet as they relate to the rest of the child's body, as it is designed to function, in motion as well as at rest.

Anything less cannot be called success.

Wednesday, May 26, 2010

"Your Child Will Be Normal"

I doubt very much that your parents did not hear these same words about you, when you emerged into the world with club feet. This was, and apparently often still is, the pitch the orthopedists give to parents. Yes, it is understandable - they want to reassure the parents that Little Jenny/Little Johnny will be "just like any other kid."

The prime problem with this, well, snow job, is that it isn't actually the truth. Because the truth, in the case of club feet, is not only not that reassuring, it isn't even something that the doctors have bothered to study, once the "child" becomes an adult. Which, in my view, is a worse violation than merely trying to calm a parent's fears about their child's future.

So, this blog. I am a 56 year-old man with bi-lateral post-club feet. I am also someone who spent more than twenty years in the field of applied biomechanics - making footwear, foot orthosis, working with braces, evaluating and applying appropriate therapies for limb-length discrepancy, and footwear modifications. I also ran my own biomechanics lab for many years, lectured on and wrote chapters for a textbook focused on the above areas. I have also, and to my mind most importantly, done considerable experimentation with various mechanical (footwear and orthotic) solutions for the issues I face as an adult with post-club feet.

Let me explain why I call my condition "post-club feet." There is a parallel condition related to people who contracted polio as children, where many years later, they started getting new symptoms in their previously "unaffected" limb. This eventually came to be known as post-polio syndrome. I won't bore you with all the details, but the parallel is apt - we who were born with club feet were eventually sent out into the world after being told, in many cases, that we were now "normal." Until, for some sooner, and for some a bit later, we began to feel the pain, and slowly became aware that, well, no. We weren't, in fact, "normal."

What we were, or rather, are, adults whose feet, while somewhat normal in appearance, are nowhere near normal in function. I will go into this in some depth on future posts, but for now, I want to get your attention to one quite amazing fact:

Club feet are considered one of the most common muscular-skeletal congenital deformity in the world, affecting 1 in 10000 live births. Yet, despite this fairly large number of affected people, there has never been a true long-term study of adults with club feet regarding the outcomes of their therapies and surgeries. I am NOT talking about following the child until they are 18 - I am talking about following people now in their 30's, 40's, 50's, 60's - to better understand why these adults often have on-going chronic pain issues, and to, from that research, find better surgical solutions, better casting and bracing therapies, better outcomes for their young patients, so they may enter their adulthood without having as many problems as many of us do today.

So, that's why this blog. I am currently designing a comprehensive survey, which will be posted here when complete. The aim of this survey will be to, for the first time, compile as complete a picture of post-club feet as possible, both to aid those of us with post-club feet, and maybe, just maybe, offer a poke in the eye of the medical establishment to help them wake up and begin to understand the truth of the matter.

That despite their pronouncements, we do not have "normal" feet.