How do I Feel About World Clubfoot Day? Meh.....

Today, according to the Ponsetti Institute, is World Clubfoot Day - actually, it is Ponsetti's birthday, so there's the first clue. Not that I don't think there shouldn't be a celebration for us clubbies, but the problem is, it isn't - for all clubbies. It's for all the new clubbies, yes, all the young ones, those, specifically, still in the care of the pediatric medical community. And I think that's OK - as far as it goes.

The trouble is, it doesn't go far enough. Because for everyone past the age of pediatric care, well, you are pretty much on your own. Unless you think having one solution - fusions - is really a sign the medical community cares about you. I mean, go ahead, celebrate, but what, exactly, do adult and late-teen clubbies have to celebrate? We see the use of words like "corrected", and "cure" and "prevent." None of which are true, and all of which are designed to lull parents into complacency. The doctors want compliance, belief, trust. That's why they just can't bring themselves to tell parents the whole truth.

Even the Ponsetti community isn't hearing the truth. Just because you reconfigure the feet with little or no surgery still fails to address the other aspects of TEV - the distorted muscle cells of the lower leg, the fact that repositioning/reconfiguring does not guarantee fully optimal biomechanic alignment of the joint facets. And even by their own studies, at least 20% of those treated through the Ponsetti method fail to find long-term relief. If we also look seriously at the actual studies done by Ponsetti practitioners, they still haven't had anyone, at least not in any significant numbers, reach middle age and still report a pain-free life. So thanks, but I would rather wait for the real long-term studies before I start patting Ponsetti on the back.

Now, I am glad that the Ponsetti Institute is really trying to make a difference for the kids with CF. I am happy those kids have someone at least trying something different. But until they start dealing with the truth of the matter in a forthright way, I won't be sharing their party just yet.

And until the medical profession starts to take all of the rest of us clubbies seriously - do the real research, develop substantive solutions for those of us not so lucky to be born in the Ponsetti Era, seek good palliative treatments that don't start and stop with fusions - I will only be celebrating the day each clubby I know finds some small amount of relief from the daily grief of their damaged feet.

That's the only party I see worth celebrating right now.

My Wife Went to Carnivale, and All I Got Was This Lousy Chair

Staying home again...you know how it is. The spouse wants to go to Carnivale, where you have to walk 20 blocks just to get near the parade, then stand and cha-cha for hours, watching your kid or your neighbor's kids in the middle-school samba party selected for the twentieth space of the parade, then shuffle back through the hoards to find your car, or wait for the trolly, whichever. And you used to go with your spouse, until that last time when the pain was so bad you walked home on your hands (and you had never walked on your hands once in your life,) but that was better than scootching home on your butt. So now, you stay home, and spend six hours in front of the computer in your on-going search for the best scooter at the best price, and wonder when you will finally give in and get the damned thing.

I find it puzzling that I even need to justify such a purchase, not unlike the mental gymnastics I went through on that whole handicap placard question. You know: There are many people already in wheelchairs who need them, and I can still (sort of) walk. Man, was I stupid - or perhaps just overly stubborn, who really knows. But here I am, realizing that staying home all the time is just plain warped, as though it were some virtue. Oh, for crying out loud, man - get a clue! Just call me slow on the uptake, I suppose.

But the reality is, you aren't merely getting a scooter - wait! There's more! Yes, much more. First, if you have steps, you need to build a ramp, unless you live somewhere they actually have garages, which we don't. So - a ramp means altering the front yard -  all 8 x 18 feet of it, which in my case means no more plants in the front of the house, which is pretty sucky, ya dig? Which means a serious negotiation with the esposa, that I promise you is going to be epic. Then, you need a lift for your vehicle, as you need some way to carry the scooter when you are going more than several miles from home. There's another $400-1000. Ain't this grand?

And as for the scooter itself, well, that is where the fun truly begins! You want a three-wheeler, or a four-wheeler? One is better for outdoors, and the other for indoors, so if it looks like you just can't do much walking at all, then three wheels is for you, because the turning radius is shorter, meaning you can maneuver it around the old abode easier. But if you can still walk around the house OK, then go for the four-wheeler because it is better for the outdoors, and some models will handle off-roading better than a Willy's in four-wheel drive. And Sugar Magnolia, to you, too!

Then there is miles-per-charge - the greater the range, the higher the price, it seems. And carrying capacity - that is you, your groceries, and Spot all together, so keep in mind what you plan to do while you are out and about. If you like going to big street parties or Disneyland, plan for the higher capacity, because you know the grandhoppers will be tuckered and think of you as the bus. Just sayin'. And don't forget the accessories - most come with a nice old-fashioned wire basket to hang on the front for shopping. But then there are the rain covers, the locking back trunks, the three-toned horns, and those plastic streamers you add to hang from the handlebars, just like when you were a kid. I kid you not!

Anyway, the spouse came home with glitter painted on her face and looking blissed out. I, on the other hand, merely had a glazed expression, not unlike a doughnut. And no churros for me.

Another Window on the Issue of Pain

Pain, especially chronic pain, and even more especially bone-deep chronic pain, is not just one thing. It has many variables, solicits many reactions, has multiple dimensions. This is why it is so difficult to manage, and everyone who experiences it knows that the best you can hope for, most of the time, is to manage the pain. This kind of pain, as most clubbies come to learn, is never really just going away.

Perhaps the most difficult thing is to successfully explain such pain to others, especially to doctors. They are quite fixated on their vaunted 1-10 scale, with all the happy-to-miserable faces, as though all pain can fit such a system. They seek objective measures for a subjective reality, and while this might suit sudden-onset, short-term types of pain, it hasn't a clue when it comes to life-long chronic pain, bone-deep or otherwise. This also, I believe, explains why pharmaceuticals fail at dealing with such pain, because they are designed to target how the brain processes pain with little regard for where the pain is being generated,  which for us is in our feet and lower legs. And it also explains why some clubbies are now exploring and seriously considering amputation as a real long-term solution, for which they have ample justification.

Of course, amputation has its own issues, but bone-deep pain isn't one of them. But besides the bone-deep chronic pain, there are other types that occur with post-CF feet. There is compensatory pain - when our ankles, knees, hips and back begin to ache and scream because our biomechanics are completely screwy, and nothing is acting the way it should, our symmetry is shot, and our bodies are trying to find ways to ambulate without making our inner balance complete garbage.

There is the pain we get when our arches cramp, our calves seize up, our toes get corns from being hammered and press against our shoes. There is the feeling of our feet being in traps all the time, because we need all that tight support to get through the day, and when we take those tight shoes or boots off at the end of the day, or remove our AFOs, we scream from the effort our muscles and joints have to make merely to relax. It's almost as if we are better off inside those traps.

Essentially, clubby pains are all about trade-offs. We trade one pain for another, just to shift the pressure, just to take the edge off. An ice-water soak one day, heat the next, pay for a day at the museum by calling in sick because we can't even think about getting out of bed. We get tired of the tight boots and wear slippers all day Saturday, and then pay for this small cheat on Sunday. Trade-offs, but never substantial solutions.

Yet despite this, despite the pain, the half-measures, the frustrations with the medical community and their near-absolute ignorance when it comes to our particular feet, most clubbies I know are driven to enjoy their lives in spite of these awful realities. Some are driven with their love of sports, some are driven by their careers, some merely by the stubborn refusal to be beaten down by the dubious burden they were born to bear. We deal with pain because we must, but we deal with life because we insist on it. Nearly every clubby, at some point in their life, usually after bearing the burden of pain for many years, feels like it will inevitably bring them to their knees. Yet even then, they fight, they demand more of the world, of themselves, because they know something about dealing with life that people who are not carrying such burdens don't know, may in fact never know.

They know there are others dancing the same dance, limping the same limp, who really do get it. Who know that some stupid 1-10 scale is meaningless, who know how to dig very, very deep inside themselves to squeeze every ounce of life out of life. They face the battle with determination, because that is the only viable response. And I am happy to be among such fearless warriors, who help me lift my feet every day.

A Happy Hour, A Happy Life

I spent more than 30 years working with people by working with my hands - making shoes and orthotics, helping people walk better, with less pain, find a little more happiness in their lives. And I was pretty good at it.

But then, my hands went on me. That is, they began to go numb after not much use each day, and would become quite painful. So - it was time to change careers. And give up riding my motorcycle. Never got over either, really. So, things being as they are, I don't get to work with my hands as much as I'd like to. Until a few days ago.

My shoes had worn quite a bit, and my usual guy is now 86 and no longer doing the work - in fact, I'd been urging him to retire since he turned 75, but shoemakers are a stubborn lot. Fact, yeah! So, I went to my old colleague Arnie Davis at Davis Foot Comfort Center here in SF, and he just pointed at the shop and said, "have at it." So....

I spent two hours, fighting the numbing, but still - shear joy! As painful as it was, I found my hands and eye have not lost any of the skills I spent years developing. Dust, the smell of shoe dye, the noise level, the strain - none of it detracted from the shear pleasure of making something right again. To build, and shape, and finish to a beautiful surface, to find I can still achieve a perfectly balanced shoe....

If you have not been a maker of things, this may mean little to you. So few people are true makers anymore - it is not very fashionable, especially to have to spend years learning a very complicated and not very profitable skill. Let the computers and the robots do it seems to be the prevailing thought today. But to actually make a thing, especially something that has a use, that changes people's lives, that makes a difference? Well, I feel sorry for the people who don't ever get to know this joy.

I may not get to do such things many more times in my life, but to see that I still have the skill, that my hands, my eyes, my being remembered, acted, created - well, that is worth more than money can ever compete with. That, my friends, is real happiness.

Muddy Waters

A recent kerfluffle between several  clubbies on a to-be-left-unnamed group site showed how once again, there is a conflict between what we clubbies have come to know as the truth about our situation, and what the medical profession continues to misrepresent to the parents of children born with talipes. In their continuing effort to a) not upset the parents, and b) to keep the parents believing that the medical profession has all the right answers, they would have all believe that they can "correct" and "cure" club feet. This is such an insidious construct that even when such parents hear from us, people who have had to endure the weight of that lie all our lives, they react with sometimes angry responses, telling us that we are lying. Even in the face of those who have had to live with post-CF all their lives, such parents cannot abide hearing anything that contradicts the lies they are being fed.

Even with the application of Ponsetti treatment, there remains a failure rate of about 20%. But this, too, is misleading. Failure rate, as measured by both traditional and Ponsetti-focused practitioners, is based on how far the feet remain deviated from positional "norms". This is an important distinction: it affirms that the entire medical establishment focused on talipes remains convinced that positional deviation is the entirety of the talipes condition. The first clue is in the descriptive term itself - talipes equino varus/valgus - each word describes a positional aspect of the foot. Nowhere is there acknowledgment that the condition is other than positional. Yet there is substantial research showing that there are other elements, most notably, the distortion of the muscle fibers of the lower leg, that contribute to, attend, and potentially point more concretely to a more accurate etiology. The continual willful ignoring of this and other issues that are raised by both research, and by the actual life experiences of post-club feet sufferers by the medical establishment speaks volumes, and merely makes the divide between truth and fiction ever larger.

While I do not in general blame parents for wanting something positive to anticipate for their child, I find it beyond bizarre how, once faced with this new information, there remains a desperate desire to remain ignorant of the truth. However, it is their problem to deal with, not mine. I will continue to shake the trees of the medical profession until at least one reasonable professional emerges to start facing the realities we clubbies face, and who is willing to begin grappling with the true nature of club feet.

As for those who feel insulted by the use of the term "clubby": I will continue to use it, as a reclamation of the truth of what I endure. Those who object to this term are free to not use it. It is basically that simple.

 The following is an excerpt from a publication in the © 1981 British Editorial Society of Bone and Joint Surgery 0301 -620X181/30S6-0417

A HISTOCHEMICAL STUDY OF MUSCLE IN CLUB FOOT
D. H. GRAY, JUNE M. KATZ
From the Departments of Orthopaedic Surgery, Middlemore and Auckland Hospitals, and the Department of Surgery, University of Auckland, New Zealand 

Abstract 

A histochemical analysis was made of 103 muscle biopsies taken from 62 patients with idiopathic club feet. Any reduction in the diameter of the muscle fibres associated with wasting of the calf muscle was recorded. Histochemical abnormalities existing in these biopsies were revealed by comparison with normal biopsies obtained from the normal legs of 13 children with unilateral deformities. No significant difference was found between the diameter of the muscle fibres taken from normal and affected legs aged under six months. This indicates that wasting ofthe calfmuscle is due to a reduction in the number of fibres rather than their size. The muscle structure was normal excluding denervation and reinnervation. The soleus muscle in patients aged under six months contained 61 per cent Type 1 fibres in the affected legs, compared to 44.3 per cent in normal legs. Similar values were found in the normal and abnormal tibialis posterior muscles, long flexors of the toe and peroneal muscles. The change in composition of the soleus
muscle and the reduction in the number of fibres may be caused by a defective neural influence on the development of the limb in club foot.

 The next is the last paragraph of the Discussion:

The development of a full complement of fibres is under neural control in all types of muscle. Therefore defective neural influences on the development of the limb could account for the wasting of the calf and the maturation peculiar to the soleus. It is unknown whether this latter abnormality is an aetiological factor in the generation of the club foot, or merely concomitant with the primary genesis of the deformity in the bones of the feet. Isaacs et a!. (1 977) have also suggested that idiopathic club foot may have a  neurogenic basis. There appears to be increasing evidence that the nervous system is involved in the genesis of club foot, and we suggest that the result of such involvement is defective myogenesis.


It should be noted that this is merely one of 11 such studies I have located so far. There is nearly always a speculation as to the role played in the etiology of talipes, yet there is no parallel response from the same medical community as to how these factors might actually shift thinking, how they might cause some reconsideration of treatment, and most importantly, how they might re-shape how and what doctors tell parents about the true nature of talipes as it may affect their child. The silence, one might be pressed to say, is deafening.

What's Important to Remember

I have club feet. I am not club feet. They are a part of who I am. They are not who I am. 

I experience chronic pain. I am not chronic pain. Pain is a part of who I am. Pain has shaped my life in many ways. Pain is not my life.

I have struggled because of my club feet and pain. My struggle is not just my club feet and pain. Struggle is a part of life. Struggle is not all that life is.

All that I am includes things that are difficult, and things that are less so, things that are neutral, and things that allow me to soar, things done to me, and things I do. I am not any one of these things. I am all of these things.

New Guest Post - Lacey Gets Her Wings!

 I am thrilled to be able to share the following guest post with you all! Lacey Phipps is well known to many clubbies, both for her fantastic dance moves, and her extraordinary decision to undergo double lower-leg amputation, in order to end years of pain and frustration. Her decision, and her manner of dealing with all that decision's ups and downs, have been instrumental in helping me change my own perspective on amputation as a therapeutic solution, but for a number of other clubbies, as well, who are now making that same brave decision. So - I will let her tell the story directly!

My decision to amputate came from the fact that my feet were no longer useful to me. I was born with a condition called clubfoot. I was treated with a modified Kite method by Dr. Charles Johnston. When this didn’t work I had several other operations in the hopes that they would “fix my feet”, these included tendon lengthening, a triple arthrodesis, and when all that failed they just kind of “put together things that looked like they might fit”. After 20 years of this I got tired of it. I had been in a wheelchair for years by the time that I decided to have them amputated, and finally I had enough.

My first suggestion to those of you who are considering having this done is be sure you’re really ready for the consequences. I didn’t realize how hard things were going to be when I did this. You don’t realize how important legs are in simple things like rolling over in bed or putting pants on! Getting onto the toilet is an adventure as well, as are a million little things that you take for granted every day! You have this time between getting them amputated and getting legs where nearly everything is impossible. For those times you need a lot of people supporting you! When I first brought up having my legs amputated everyone was shocked for one, and some got over it sooner rather than later. I was tired of being dragged around to all these other doctors and never getting any kind of results!

Second suggestion; get a wheelchair after you have it done. You may think that you’ve got amazing crutch skills, but trying to balance on one fake leg and crutches is almost impossible! The equipment you’ll need is an important topic. You’re going to need things like wound care supplies for when you get home, a shower bench, a transfer board for getting in and out of the car when you don’t have legs on unless you’re really strong, a wheelchair and, a good set of forearm crutches ( I highly suggest Walk Easy). It’s pretty expensive but insurance should take care of most of it!

The next thing you need to think about is the actual act of going in and submitting to having your leg amputated. My experience was at a children’s hospital, so for those of you not lucky enough, or unlucky depending on how you see it, to have it done at a children’s hospital your experience may be different. All I remember was going into the holding bay for those having surgery, having them put something in my IV and I was out. Waking up was weird especially after the second one. After the first one I was pretty much sedated for 3 days, but after the second one I remember everything from waking up and the sun was down, to having a friend bring me a blanket and her rubbing it on my face for some reason. 

The next step in your recovery will be going off to inpatient rehab, depending on how good your insurance is again. Here you’ll learn how to do everything for yourself again. I was only here for a couple of weeks each time, but it helped tremendously.

I wish you peace and I assure you as someone who’s been through this already that it will all be ok! You’ll come out better after all is said and done with a new lease on life! If you’d like to contact me because you or your child is considering amputation please feel free to send me a message on Facebook. Just leave a comment below and I will get in touch! My prayers are with you in this difficult time!

So many thanks to you, Lacey! We all benefit from your hard-won wisdom!

 

And to you other clubbies, or any doctors who lurk here from time to time - guest posts are urged, welcomed, and really nice to see. Help your fellow clubbies with a bit of your story, or solutions that have helped you. I look forward to hearing from you all! 

Oh, and most importantly - All guest posts are vetted by me before they are posted, as no one can post to this blog except me, regardless of what some may think!

Yet Another Study That Tells Us What We Already Know

Well, perhaps it can be chalked up to poor funding for real long-term studies, or maybe it's merely a lack of imagination, but once again we have a study telling us what we already know using protocols that fail to ask the right questions of the right target population. In a recent study, (Adam Graf, MS, et al. Long-Term Outcome Evaluation in Young Adults Following Clubfoot Surgical Release. In Journal of Pediatric Orthopaedics. June 2010. Vol. 30, No. 4. Pp. 379-385.), the findings are not only not surprising, they are also less-than-stellar as regards the conclusions as stated in an article about this study, at eorthopod, to whit:

The pain and movement issues lowered the AODFAS scores in both the Ankle/Hindfoot and the Midfoot scales. The Disease Specific Index, another assessment, found that 96 percent of the feet were painful. (italics added) Results also showed that patient who were on their feet for long periods of time or needed to do stressful activities, such as running, jumping, or stair climbing, to name a few, experienced more problems with their affected foot or feet. In fact, all patients reported some level of pain at the end of the day or after strenuous exercise.

The conclusion seems to be that adults who were treated as children for their clubfoot or feet still have issues with their feet later in adulthood. (well, duh!) Although these problems don't cause problems with basic daily living, (Big Fail Here!) they do provide limitations in how active the patients can be. The authors suggest that following these patients into their later years to see if any changes occur, particularly as they enter the stages where arthritic changes may occur. (poor syntax was in the article, not my fault!)

They don't cause problems with basic daily living! Gotta love that one! Who were these investigators (being generous here) actually talking to? Well, you can see from the below items that they followed up on people as old as 24 years old!! Yeah, that's about as long-term as they seemed interested in. Too sarcastic? Maybe, but here we just have another half-hearted attempt to get something published rather than a real effort to get at the facts. To  make it worse, they study only covered a very small patient population:

The authors of this article reviewed and evaluated the long-term outcomes of the comprehensive surgical release. They collected data from 24 adults (17 males), aged from about 18 years old to 24 years old and a control group (with no clubfoot) of 48 people. Eleven patients had only one clubfoot (unilateral), while the remaining had two clubfeet (bilateral>). As children, none were successful with casting so they underwent surgery before they were 18 months old. Fourteen patients went on to have further repairs.(Again, a poor language choice - "repair" suggests a fix was found, whereas many of us know that so-called repairs are often as damaging as the initial interventions.)

 Now, I want to believe that the authors were sincere about getting at some elements of the truth, but perhaps we need to see some clubbies get into the field and be the people to conduct the serious studies we need to see done that may finally convince the medical establishment that more needs to be done. Until then, I hope you will forgive my sarcasm and skepticism about studies that fail to go as far as they need to. They consistently fail to seek out older clubbies to include in their studies, they fail to address the real issues we face daily, and while seeking answers as to etiology are certainly important, they neglect those of us who are already trapped with feet that encase our lives in the cement of chronic pain. They need to start asking better questions. And they need to start listening to us, if they ever hope to learn anything new.

 

I would suggest they start by making contact with the Facebook group over at adults/teens with club feet.  They would have a very receptive audience.

Don't Weight!

Well, here we are once again - holiday season. Regardless of your denominational predilections, we all have to face the music - and the food! Everyone wants us to drop over, bring a dish, or this year, we are hosting, and have to feed the hoards. In the olde days, it was known as the groaning board, but today, we just call it the stuffing table!! Or something like that.

But for us clubbies, we end up every year just groaning. All that extra food is NOT helping our painful tootsies one little bit! But does that exempt us from the feeding frenzy? Oh, hell no! Not in the least. So, all those pounds we struggled valiantly to shed throughout the preceding year? Voila! Theeeeeiiiiirrrrr baaaccckkk! 

What to do, what to do?

There are many tried, and mostly untrue methods, but the one I use more often than not with some success is what I call the "No, thanks!" approach. It works like this:

1. Use the "island" approach to plate loading. This is quite simple - pretend you are a very picky child, who cannot abide to have the carrots touch the mashed spuds, and so on. Make sure there is visible plate space between every item on your plate. By its very nature, you will put less food on the plate! Plus, everyone will think you have OCD, and be extra kind to you. Or, avoid feeding your habit, and thus not be the one to offer you seconds. You see? It works on everyone!!

2. Make each item served the same size. Want turkey? Fine, just make sure you eat the same volume of vegetables. Don't like veggies so much? Then have just a wee little bit, and make sure your mashed taters occupy the same sized space. Excellent portion control strategy. Now, you try it!

3. Skip the bread. In fact, try to decline at least one item from any meal that is pure carbs and/or starch - taters, rice, bread, pastries, etc. I am NOT suggesting you deny yourself holiday pleasures, just be more selective. You will find you enjoy the one's you do have much more.

4. Use the tight belt theory - if you have to let out your belt one notch, you are clearly full. Now, raise your hands, and step away from that table, pardner!! I've got my eye on you!!

5. Learn to tell the difference between being full, and being not hungry. It usually takes us a while before we feel full, but by then, we have already most certainly and absolutely eaten too much. Admit it - we are all just little piglets at heart. But if you slow down your eating, taking long pauses between bites, you will realize more rapidly when you are no longer hungry. Once you do realize that - stop. Drop that fork right now!! Push back your chair, raise your glass of fine CaliforniaItalianFrenchGreekAustralianArgentinian wine and toast your host as the most with a boast about either Coast! Don't forget to smile!

6. A word about noshing between meals. Don't.

7. Conversation and good friends should appease your real hunger. Food is merely the lubricant to engender that process. Remember you wanted to dance after dinner? Think how much better you will dance if you are light on your feet!

OK. Now, it's up to you. Go on, take it for a spin! Handles nice, right? Making Merry with Mary and Mark in the Holiday-o-choice spirit should enlighten, not enheavi-en (OK, not a real word - but it SHOULD be, right?) You have the wheel, you are in control. 

Now, be a mensch - pass that pie!! Uh, sorry, just kidding!!!

Happy Holidays!!

Dream Sequence

So, I had that dream again. You know? The one where my feet are perfect? Yep, that one. Well, imagine my surprise once again awaking from that dream, and damned if it was just another lie. Crud. 

 

Yeah, I have that dream every few years. I get to wear nice sexy Italian loafers, run a mile in less than four minutes, climb Mt. Kilimanjaro, dance with the stars till 5 AM, do every museum in Paris in three days flat, take the grand-kids to some damned theme park for an all-day outing - blah-blah-blah - then get up the next morning and do it all again. No pain. No worries.

Right.

I hate that dream. Just a big tease, but no delivery.

At least when I wake up from one of my flying dreams, I know what to expect - gravity still works. I enjoy those dreams.

A lot.