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.

A Thought Experiment Regarding PTEV Syndrome

First, let me just say this post is a prelude to something I suspect will take much longer and far more detail to explore, but wanted to get the raw idea down before it slips from my increasingly ephemeral mental moorings. You have heard me talk about the issue with our lower leg musculature, how the cell structure is radically different than in non-clubby legs. What has only just occurred to me, in thinking about this at some length, is that the very act of changing/altering our initial TEV toward a plantigrade position, through castings, bracings, and surgeries, may be setting us up for future pain issues because of the very nature of that cellular deformation.

If we look at how muscles work, by stretching and contracting to provide motive power, it is clear there is a level of elasticity that is critical to those functions over the course of one's life. If the elastic nature of these muscles is altered, that is, less elastic, then changing the position of the bones acts to alter the oppositional nature of the muscle groups, as well. This means that some of these muscle groups are likely to be subject to more stretching while the opposing group becomes more contracted, while at rest. In a normal muscle, such a change would be offset within a short period by the ability of the muscles to strengthen and grow. But if our muscles, already atrophied at birth, cannot grow or strengthen as readily, and as seems obvious for some clubbies, not at all, then there is less ability for the muscles to make those necessary adaptations.

This would suggest that the kinds of muscle pains (not joint pains, specifically, but in the muscle bodies themselves) some of us clubbies, especially as we age, experience may be the result of this musculature aspect of post-club foot syndrome. This non- or less-elastic nature may also explain why there is the propensity in some clubby children for regression of the positional aspect of the syndrome, where additional TALs are performed. If the original tendon lengthening or repositioning proves insufficient, perhaps it is not the amount of change that is the issue, but the act of making that change causing even further reduction of elasticity within the muscle body itself. By increasing the posterior group's length, the anterior group is thereby shortened. Both muscle groups, then are being forced to perform something they are poorly suited to perform.

This requires far more research and analysis, of course, but I wanted to put this out to stir the waters and get it down for further consideration.

Mind Shift Ahead!

There is one thing more difficult than dealing with chronic pain and the awful responses we clubbies get from the medical community - our own attitudes and beliefs. We as individuals are shaped by many factors besides our experiences as a clubby. Our communities, families, peers in school, media, the times we grew up in, our country, etc. So our beliefs - about ourselves and the world we inhabit - are often quite difficult for us to challenge and change. After all, we want to be a part of our community, and we already battle how our handicap separates us from that community. It might center around our need for AFOs or different-looking shoes, when we would greatly prefer to mesh with the fashions of our time and locale. Or it might center around how our handicap and the attendant chronic pain limits our participation in activities with our families and friends. It may also be strongly affected by our financial conditions that limit our options for responding to our pain and medical needs.

But however it affects us, we each have to find ways to respond to those forces in the best ways we are able. For some of us, this means often denying we even have a problem, while for others it means dealing with depression, or worse. However we do so, our main goal often appears to be to find ways to avoid dealing straight-forwardly with the fact of our handicap. After all, who wants to have to spend so much of their lives having to deal with this? We would all rather be doing better things, like living life the way our friends and families do.

Denial, however, has no positive impact on our pain or possibly worsening condition. We ARE clubbies - this is an undeniable fact. Thus, we need to shift our perspective, to admit the truth of our condition, and make our lives work with this fact fully incorporated in our daily concept of our self, and how we live this life. This does NOT mean that we do whatever the latest medical consultant tells us we need to do, because we, or at least many of us, know how little these people actually know about our condition. "Well, we COULD do...." is NOT a good answer to our needs. Yet we are, like most humans, conditioned to trust and believe whatever a professional tells us, especially in the field of medicine. The problem is, doctors are themselves conditioned to believe they are always the  expert, and therefor MUST know what the hell they are talking about. They, sadly, are often even worse at challenging their own beliefs than non-professionals are.

But we need to struggle against that tendency. We need to challenge such ideas such as whether to pay for a more expensive alternative that has the potential to really make a difference, or settle for the cheapest alternative that may only make a small difference, or only for a brief period of time. We also need to challenge our desire to wait for the insurance provider to be willing to pay for something, versus biting the bullet and finding some way to pay for it ourselves, rather than forgoing real relief. The truth is, accepting some bureaucrat's NO as something you have no choice but to be limited by is the same thing as doing nothing to help yourself find relief. I have always paid for my own custom shoes myself, both because I know they are the best thing for me, and because fighting with the cretins at an insurance company once was enough. Now, I get what I need myself, rather than allowing myself to be limited to bad decisions by ignorant people.

But I do not pretend this is easy. Money is tight, and coming to such decisions requires information that we may not have, or may not fully understand or appreciate. But the first step to real change is making the decision to not take someone else's NO for an answer, on any level. First, you need to decide, once and for all, that your needs matter more than someone else's limits based on their ignorance. Once you get to that understanding, the rest becomes easier. But you have to get to this first step first. Ask yourself this: "Why do I think I am not worth putting me first in my life?" Then ask, "Who tells me that?" And finally, "Why have I chosen to believe such lies?"

Shifting belief is not easy, and can be quite frightening for some of us. But we cannot avoid this forever, unless we are content to be a victim of the ignorance of others, and captive to the pain and limits you face every day.

It's your choice.

The Limits We Face

This is something I recently posted on the clubby FB group:

To continue the discussion on limits, I think we all need to remember that having limits is not to be equated with being inferior, or less-than. It is easy to fall into an unconscious response to our differences as a sign we are somehow worth less than other people. So much is made in our societies about being a "winner", a high achiever, about physical perfection, about what constitutes "cool." But these are all artificial ideals, and often serve to enforce class differences, rather than say anything true about any one person.

When I deal with my differences, and experience an adverse or somewhat muddled reaction from another person, I have choices in how to deal with their reactions and responses. I can choose to be upset, self judgmental, and depressed. Or, I can use the occasion to educate the other person, or to let them know they may need to seriously reconsider their own values by how I respond. I always feel like I exercise as much control over the situation as the other person, specifically in how I choose to respond. It is likely such people are anticipating that I will have a negative response, or self-damaging response, to their ignorance. But I usually find if I take the opposite approach to what they seem to hope for, I can nearly always fully control the outcome.

My feet may be screwy, but my mind is just fine.

 

How about you? How do you deal with your limitations, especially emotionally? Do you beat yourself up, or struggle to accept seeing yourself as having a handicap? Or have you lept over that chasm and landed intact on the other side?

Dancing the Night Away

OK, so I have restless legs, so what of it? Attended the wedding of a couple of youngsters yesterday, and as always happens, mi esposa wanted to dance. Now, let me tell you that mi esposa is one hot dancer. That's how we met, in fact, while dancing at a Cinco di Mayo party. So I do everything I can to urge her to dance - which usually takes "Hey, do you wa...."? Then I have to run to catch up. Now, if I do everything right, I can usually make it through the event with minimal damage. But "everything right" means: support socks, ankle braces (in my pocket, just in case), a spare pain med (again, just in case,) lots of rest early in the day, dance one dance, sit out the next two, dance another, sit out the next three, etc. Usually works.

Unless the DJ is particularly devilish. Which was the case last night.

Perfect play list. Superb timing. A number of sub-par dancers who needed a good role model. A certain young dude developing a fascination with mi esposa. 

I didn't have a chance.

Did I tell you my wife is one hot dancer?

I'm gonna kill that frikkin' DJ.  

Right after I regain the use of my lower extremities.

What Needs To Happen

You have heard me talk about the need for research, and how poor the existing research is as it applies to post-CF syndrome - well, essentially it's non-existent. But there is one area for which there is a lot of papers in the literature, and that pertains to the muscular atrophy most clubbies have in their lower legs. I say lower legs, and not simply calf, because the atrophy affect all the lower leg muscles, not merely the posterior group - the gastrocnemius and the soleus muscles. And despite the rather large number of papers that look at this issue, the problem lies with the conclusions and focus of such papers. Most are trying to use this aspect, known as the histological aspects - looking in detail at the tissues at the cellular level - to better understand the etiology of TEV. That is, the cause.

Now, i applaud every effort to delve into causation, in hopes that someday, some therapy such as in-vitro stem cell therapy might actually prevent TEV altogether. That would be a wonderful outcome. But such research fails to address some rather important ethical and practical issues - for starters, what about this atrophy and its implications regarding those already born? How will it affect us? Will it become more problematic over time? Are there ways to offset those impacts? What role does this atrophy play for the issue of recurrent deformity, where more and more surgery is applied? Is it possible that the atrophy itself leads to the recurrence? And if so, why? What mechanisms are at play? How can a better understanding of this muscular degeneration inform more predictable outcomes? perhaps there are degrees of deterioration, perhaps the element of the tight Achilles has little to do with the Achilles at all and everything to do with the muscles involved.

But without taking the existing research and using it to ask new questions, there is little hope that any of these questions will find answers, certainly not in the near term. And so we post-CF folks are left to be guinea pigs without a researcher. Add this to the failure of the adult orthopedic or podiatric community to be willing to seriously address Post CF Syndrome, and where does that leave us clubbies?

To fend for ourselves, that's where.