Open Letter to the Medical Community

An Open Letter to the Orthopedic, Podiatric and Adjunct Members of the Medical Community, On the Topic of Adult Post-Club Feet

What follows is an open letter to doctors of all kinds who have treated any adult with post-club feet. If you agree with what is contained herein, I hope you copy this letter and pass it on to those very doctors. The more voices of clubbies I hear, speaking with astonishingly similar life experiences, of the chronic pain and the multiple failed surgeries and other treatments, the more I am convinced it is up to us to shake the medical community out of its complacency and certainty. Its time they had cause to start learning from us, from the failures repeatedly being foisted on so many of us. We deserve better.We deserve to be heard.Loudly, if necessary.

You should feel free to copy the letter, sign your own name to it, change the age for better accuracy if you like.  You should also delete the paragraph near the bottom in italics, as that applies specifically to me - don't worry, it's pretty obvious. This is an open source piece of software, and I urge you to share it, pass it on. Make our voices heard.

Notumbo


Dear Doctors and Allied Professions,

At the age of 16, I, like thousands of other kids born with talipes equino varus/valgus, I was shown the door by my pediatric orthopedist and pronounced cured. Yes, he used that exact word. Yet by the time I was 19, my real problems began, and have continued, with slight variations, to plague me with chronic pain, and increasing limitations, ever since. I am now 58 years old, and my knees have begun to succumb to the decades of pathomechanic deterioration. Yet, despite many, many attempts to get real relief, the only “solution” offered up by countless doctors is a triple arthrodesis – a fusion. Or maybe some hardware, or maybe another tendon transfer, or maybe something that will serve to build up even more scar tissue. This despite all the literature that demonstrates such a procedure (a fusion) would offer me five, maybe ten years of relief. Then, my ankles, knees, hips, back…They would all eventually deteriorate, and since such a prospect is already inevitable without such a fusion, I cannot see why it makes a bit of sense to follow such advice.

You see, here’s the problem we adults with post-club feet face, daily. We live in near-constant pain. We live with the knowledge that things are only going to continue downhill from here. We live with professionals giving us advice that is not based on any real research. We live knowing that the pediatric medical community and the adult medical communities never really speak to each other, at least not in the instance of talipes. The literature demonstrates this failure. With only two exceptions – a study by doctors utilizing the Ponsetti technique, and another by Dobbs, et. al., there is little evidence that, once we clubbies, as many of us refer to ourselves, are seen as a resource for learning better approaches to the treatment of club feet. And, we live hearing the parents of new children born with talipes wanting reassurances, yet not being told their child has a nearly equal chance of living their life with chronic pain. This is a grave disservice to those children, and a lie to their parents. Because one day, when their child is twenty, thirty, forty years old, they will learn how they were deceived. And if my mother is any indication, they are either going to be very angry, or they are going to feel deep guilt that maybe they should have sought other solutions.

This is further evidenced by the life experiences of many adult clubbies. Some have been subject to multiple surgeries, most of which have left them worse off than before the surgery was performed. And, if you were to actually listen to many of these folks, you would hear how often the language used by the doctors includes some variation on the phrase, “well, we could try…” This is, among many other pieces of evidence, a clear indication that there is no real research, no consensus, in fact, there is no evidence the proposed surgeries will really have the desired effect. In truth, it is a guess. In most types of research, the guinea pigs are followed up with studies, tests, some form of rigorous questioning as to the why, whereof, as to the future viability of the organism having a reasonably pain-free life. We clubbies don’t even get that level of respect.

If you are detecting anger and frustration in this letter, you cannot even begin to fathom its depths. There was recently a forum of specialists from around the world who convened an annual conference whose purpose was the study of a very rare sleeping disorder that affects no more than 500 people in the world. In the world of talipes, there are as many as 5000 people born with this congenital deformity in the United States alone. Clearly, there is something very wrong with this picture. For a congenital deformity that has been studied for literally hundreds of years, to NOT have substantial follow-up studies done on the long-term outcome of the treatments and surgeries applied to that deformity, is more than sad – it’s a sign of true medical negligence.

How could this scenario change? Well, for starters, maybe you, the doctors and adjunct specialists such as orthotists, physical therapists, etc., could start listening to us, not just one at a time, but as a growing community of long-suffering people. You might begin to learn how often the procedures you suggest and use actually fail. You might begin to see that the foot is not an isolated part of the body, that the biomechanics involved are worthy of deeper study, that our feet are attached not merely to our legs, but to our entire outlook on life. Chronic pain is something no one should have to live with, but more importantly, living with the constant awareness that things are only going to get worse wrecks havoc on our emotional lives. When we hear from other clubbies the stark similarity in experiences, we find our frustrations, our dismay, and yes, our anger, growing louder.

So, what is it that we clubbies want? Well, as I said already, you could start by listening to our experiences, and maybe put that together with the dearth of solutions in your arsenal. You could be the detectives every doctor should strive to become. You could stop saying, “well, we could….” And you could stop, especially the pediatric community, using words like “cured, fixed, repaired, corrected, etc.” The correct term here is “altered.” Plantigrade as a goal is a failure of the imagination. It fails to include the complete biomechanic picture into the treatment agenda. Look how long it has taken for the general medical community that treat children born with club feet to embrace (not all of them, to be sure,) the Ponsetti technique. But at least there was a Ponsetti to try and move the ball further down the field. Where is the equivalent in the adult medical community? And, maybe you could start talking to each other, across disciplines, break out of the silos of specialization, out of the political battles between those with different letters after their names.

Now, I have been taken to task by several orthopedists, who have tried to tell me I don’t know what I am talking about. Well, that’s just a way to avoid the question, in my view. In fact, I have read the literature, and after spending more than 20 years in the field of applied biomechanics, I think I can safely say I understand what I have read. I have three standing, on-going searches for any and all articles, studies, monographs, thesis, from anywhere in the world, that deal specifically with club feet, and besides the two studies mentioned earlier, I find nothing to dissuade me of my position. Believe me, I would truly like to be proven wrong about the conclusions I voice in this letter. But, the operative word here is, “proven.”

The status-quo in the world of post-club feet cannot be sustained. Thanks to the Internet, more clubbies are finding others every day, and they are sharing their stories, their experiences, their frustration, their anger, and most unfortunately, a growing sense of defeat. This last thing, this feeling that, well, maybe I should have them amputated, cannot be permitted to grow without some kind of change of perspective by the adult medical community. I think you, the doctors and adjunct professionals are going to see more resistance to the old and failed solutions. You are going to see more clubbies demanding something that actually works. I, we, cannot believe that the problem is so difficult that no real changes in approach have occurred in many decades.

It is time for new ideas. It is time for some real imagination, of intentionally driving toward better solutions.

It is time you began to respect the guinea pigs, and actually finish the studies.

The courtesy of a reply is requested.

 

Signed,