Feets, Do Yer Stuff!!

Last day of work till next year - yee-haw!!! I've been thinking about this blog for some time now, and wondering what I can do to get more of you to share your own experiences. I thought, "Self, how about monetary incentives?" And I responded, "Well, Self, you got squat, so how do you plan on doing that?" And I was all, "Why you gotta rain on my parade?" And I was all back, "Cuz rains all we got right now, fool!" I do that sort of thing to myself now and then, especially when I'm off my meds, er, chocolate. So if I can't pay you to jump in and share, its back to the drawing board.

I know from other discussion groups and blogs out there that there's lots of sharing among parents of tykes with club feet, and that's as it should be - they get so little real information that sharing is their best option. But us adult clubbies, well, we're another story. I saw a photo of myself at about three, with my Mom looking at my feet, encased in another set of casts. I saw her worry, and her confusion, and wondered how she did it with so little support. She wasn't just worried about my feet and comfort in the present moment, but saw and felt the road I would have to walk through my life and wondered how I would fare, and hoped every day she was making the right choices. That all of those choices were framed and pressed on her by a small handful of medical folks, whose knowledge and skills she had no way of verifying, or putting into a comparative context, meant shear trust was her only real option.

I am of course grateful for all her efforts on my behalf. But I can't help but wonder how different parents facing these same questions today will cope, given the much broader scope of support and information available, especially on the Internet. But one way they are no different at all is they, too, must trust how the choices they make now will affect their child as they become adults and walk the road of their lives. That is one part of why I continue this site - not to say each child will face the same trials many of us older clubbies have, and continue to do, because each case turns out different, and there are many successful outcomes - but I do this for those that are less successful, because even with Ponsetti, and other advances, there are still failures of the process, and each one still has to walk through their own life. I just don't want these clubbies to feel as alone and in as much pain as I and many others have. I hope to provide that information and support that wasn't available to me.

But I can't do it alone, first because I don't have all, oh, hell, I don't have very much at all, of the answers, and second, because support takes many people sharing their triumphs and ongoing problems with others walking a similar road. What worked for you might make a real difference in someone else's life, and vice-versa. And what remains a difficulty for you may help other clubbies know their own pain and experience isn't only theirs to bear. I have to think that the best incentive is in fact your own life experience, and hope in this next year many of you folks around the world with post-club feet find the courage and time to open up more, share resources and ideas, commiserate and cajole where appropriate, and make 2011 a better year for clubbies everywhere.

Happy New Year to you all.

Holiday Cheer, or, How to Kiss Under Holly When Your Feet Are Screaming

My sweet Patootie likes to dress up the place for the Holidays, so as you probably can guess, I am the one who gets to do the work - lights, tree, etc., etc. I get to take it down and repack it all, too. It's gotten to the point where I'd like to design a house with built-in lights that can be exposed and turned on by the push of a button, so I don't have to keep up the seasonal discomfort associated with all that cheer. As you might imagine, I get to wear two hats this time of year - Sandy Claws, and Grinch. I think I'd trade them both in for one of Druid in Cave, at least for one year, a vacation from the day before Turkey till the day after the New Kid on the Block drops down the chute. But I regress...

My office held its annual Holiday blow-out, this year as a moving feast, er, drunken revel, going from one place to another. Despite the generous libations, it did not suffice to anesthetize my screamin' doggies, so I never made it to the last venue. Fortunately, I had an appointment with my massage dude the next afternoon, and after an hour of twisting and shouting, I was nearly normal. Which in and of itself barely attests to my over-all state, but nonetheless, it will have to do for now.

I know there are many others out there who have similar limitations, who must plan each step. Over the years, the actual "standing/walking/dancing" time allowed has shrunk, and today is far more limited than I'd like, but there it is, isn't it? And no matter how many times I ask Sandy Claws for a new bike (euphemism alert) for Christmas, I'd be more likely to get a case of matzo for Hanukkah (I am very ecumenical, for a staunch Implementarian (we worship hardware stores and garden centers - don't worry - we don't proselytize - we don't even extemporize. We just get the job done.) But the good thing about the Holiday section of the year - I can up the meds in the name of good cheer. Can't you see how much bigger my smile has gotten? :-)

Well, I may or may not update again before the tree dries out, but in case I don't, have a Very Merry Whathaveyou, and a Happy Blue Cheer, in the flavor of your choice. Make mine Cherry Garcia.

Prolo el Mano-e-Mano, Dont Count Yer Chickens, Izhak!

Another prolo session this past Saturday. Things seem still on track. But last Wednesday, went to the regular doc, who ordered some blood tests, due to my overall fatigue and aching joints. Been going on about a month or so, maybe a bit longer. So today got a call from Doc - everything came back negative......except - positive for rheumatoid arthritis.

Lovely.

And the various meds all have some really fun side effects.

I hope scotch isn't contraindicated.

Ouch! It's Like That

People who suffer from chronic pain have a difficult time understanding why people who don't, just don't get it. It's not like we like to be in pain, nor as though we all secretly desire to be addicts, or that we love to complain. No, no, and no to all of the above. But the truth is, chronic pain is the perpetually unwelcome guest. We didn't invite it, we're tired of feeding it, and we can't get it to leave. And people who do not suffer from chronic pain may from time to time experience pain, well, for them, it soon goes away. Their reality is that pain is an inconvenience. For those with chronic pain, its a never-ending intrusion, an endless interruption into the lives they would rather be leading.

Imagine never having a day when you don't have to be interrupted by some part of your body. You can never just focus on your play, your work, your enjoyment of the moment, because there is always this other thing, this monster under the bed. Go ahead, try to imagine it, I'll wait..... So, if you have never suffered from chronic pain, you probably couldn't achieve the requisite level of dark outlook, and all that attends thereof. It's OK, we know you couldn't do it. The fact is, we wish we couldn't do it, as well. But those of us who do suffer in this manner need to be patient with those who are free from such a constant encounter with pain. They really don't get it. It is what it is.

But the impact of chronic pain can affect those who live with us, work with us, and often have grown tired of playing with us, because our limitations are upsetting and a drag. I mean, lets be honest about this - handicapped people are not as much fun as people who are up for a marathon, or sky diving, or a serious set of tennis. Its not that they can't do these things, its just that they do them, well, slower, or more differently than we, the able-bodied, pain free folks would prefer. I get it, really, I do. We cramp your style.

But here's the irony, if you will. When the unfortunate happens to the presently able-bodied, its far more likely to derail them than it does with those of us who've been a long way down Hurting Road for a long time. We are better able, most of the time, to dealing with our situation, because we've had the practice. Hey, its the one advantage we have, so buck up. What makes you so upset - you didn't think you would be immune from the vagaries of the human condition, did you? Oh, I see. Well, that must be tough for you.

We who understand are left to wonder - why are you complaining so much? Get over it. Isn't that what you always say to us?

Prolo Update, Pain in the Neck, Herding Them Calves

Well, been away a bit, so not much to say about that, but waaaaay too much to say about everything else. The prolo seems to be holding on the right knee, thankfully. But my puppies have been going through a particularly rough patch of late. Think its time for new orthotics - been wearing these for a long time, and even thought they are made from old WWII tank iron, they could use a freshener. Maybe switch to titanium, eh?

The neck fusion may need a wee bit of revision - the bottom screw appears to have loosened (but they warned me of that possibility,) and they will have to go in from the back and wrap a wire around my neck. Sweet. Always thought of a garrote as something to be avoided, but what can ya do? Then again, so many people have commented about my loose screw that I wonder if I risk becoming a bobble-head.

The real issue for me currently (you really love hearing about my issues, right?) is my calves. They seem to be causing me more pain than I've ever noticed before. It makes for a feeling of weakness as I walk, and I am tending to take shorter steps as a result. It may unfortunately become a vicious circle: shorter steps mean less exercise, which leads to more atrophy, which leads to shorter steps - whew. I get tired just trying to explain it. Anyway, I keep doing research in hopes I can find even one clinician out there who has something to offer other than fusions, but little to report thus far. But stay tuned - miracles sometimes happen - the Giants, for example:-)

Well, here comes the holiday (weight-gain) season. Maybe it would help if I just kept my mouth closed? Nah - I just love pie.

Have a Clubby Thanksgiving, One and All!

Its a tradition in the Bumbus household to give thanks to all who impacted our lives in the previous year (except regarding politicians.) It is with that spirit that I am launching the First Annual Thanks for All The Clubby Stuff that may or may not have touched my life. I urge you, dear Readers, to offer your own where appropriate.

1. I am thankful to have pretty much recovered from a very bad knee injury and a spinal surgery. But not for the hospital food. I am especially grateful to Doc Smith, Prolotherapy Wunderkind, for needling me back to health. Way to stick it to me, Doc!

2. I am thankful for my dearest of dearness, oh She of the High Level of Tolerance (except as regards all the condiments crammed into the refer - that peeves her Mightiness mightily.)

3. I am thankful for all of the Readers of this here blog-o-mine, even those who have yet to write, comment, or throw gummy worms my way. Oh, you out there in Finland? Sorry about the weather.

4. I am thankful I can still ambulate, even if I come to resemble a fat duck more every day. At least the webbed feet add some advantage in the rainy season.

5. I am thankful that more people every day are being treated for club feet via the Ponsetti method, and that their long-term outcomes look markedly better than those of us not so fortunate. And thankful, as well, that some percentage of us not so treated had better outcomes, as well.

But mostly, I am thankful for the feedback I have received from many of you about this blog, even the several that smacked me upside the head. I don't pretend to have all the answers, mostly more questions, and having others to challenge my own assumptions is critical to helping other clubbies increase their knowledge, and hopefully, walk with a little less pain, for as long as possible.

Happy Thanksgiving to you all!

Another Lesson in Biomechanics, or, The Foot Bone is Not Connected to the Eye Bone

Thought I'd offer a little more insight into the inner-workings of our feet. We clubbies can't know too much, is my view, as the more you know, the better your understanding and communications will be with the docs you deal with.

Today, lets look at this whole idea of "range of motion." Simply put, this just means how many degrees of motion is available to a particular joint versus how many such a joint should have within a so-called normal range. For example - your elbow joint has a normal range of roughly 150 degrees. It would not be possible to have much more than that, as your biceps sort of get in the way. But injury can cause that amount to diminish, or someone with a very loose ligament structure might be able to hyper-extend their arms such that the amount might be greater. This is just to help it be understood that your range may be different than the "normal" range for any given joint.

This is especially true for post-club feet. And not only in our subtalar joints. The mid-tarsals, the calcaneal-cuboid, and the ankle joints will almost certainly display reduced and constricted ranges of motion. By constricted I mean that the joint might be capable of being stretched to a normal range, but in functional terms it is either too painful, or the arthritic changes make it increasingly stiffer, and thus have a lesser range available.

Now, remember - no joint operates in a vacuum - they are all working in a chain, as it were. Each joint has some level of influence on other joints, and not merely the ones on either side. The subtalar joint, as the most pertinent example, has an effect on nearly every joint proximal (further up the body) and also distally (toward the end of the foot, in this instance.) This is due to the function this particular joint plays for all phases of gait, or ambulation. Other joints, such as the calcaneal-cuboid, can influence the subtalar joint, both in its range of motion, and in its biomechanical alignments during each moment of that motion.

Here's an example: take a small box, like a box of tissues, and place it on a table. Take a small plastic cup, and place it on top of the tissue box, then place a small plate on top of the cup. Right now, everything is stable. You can shake the table, and the stack might jiggle or vibrate, but if you centered everything, the stack will probably remain upright.

Now, take a spoon, and insert the handle of the spoon beneath the tissue box, any side will do. The curvature of the spoon handle will cause the stack to tip a small amount. Now, shake the table again. The stack might remain intact, but the small plate will almost certainly shift, because you have altered the relationships between each object. Take another spoon, and insert it beneath the small cup, but on the opposite side as the first spoon beneath the tissue box. Again, shake the table. Now, you can see the instability of the stack has increased.

The place where two bones meet at a joint is called the articular space, or the articular surfaces. This is where one bone articulates - moves - against the other. The shape of each of those bone's articular surfaces is what determines certain aspects of range of motion, as well as direction and quality of motion. If, for example, there is a bone spur on or at the edge of an articular surface, it will alter the normal motion available to that joint. Likewise, alterations in tendon or ligament strength, placement, or tension (laxity, for example) will change the range and quality of motion.

Clubbies have, by definition, altered joint articulation, or patho-mechanics. Patho-mechanics is just a ten-dollar word for things not working normally. That is, they vary from "normal" biomechanic functioning. We have had our feet stretched, casted, surgerized, braced, twisted, tightly encased, and abused in myriad ways. All in service of "fixing" our feet. Unfortunately, there has never been a way to be certain, from one clubby to the next, if the articular surfaces were optimally aligned. Getting a foot to "plantigrade," that is, the sole of the foot on the ground, has been the primary measure us success with club foot treatments, and that can be accomplished without ever acquiring excellent, or even good, alignment. Add to this the action of stretching, casting, bracing, and encasing the small, growing foot. The relative strength of the tendons, ligaments, and muscles on opposing sides of the joints will nearly always be less than ideal, and sometimes downright wrong.

This is why those of us clubbies who did not have the best of all possible outcomes face an increased propensity for arthritis in the joints of our feet, not to mention ankle and knee problems. There is even cause to believe, (though no real evidence, as no studies into the question have ever occurred) that we face a higher-than-average probability for hip replacements down the line. Again, these are all a function of reduced and restricted ranges and quality of motion in some or all the joints of our feet.

I realize my posts are often depressing as all get out, and I apologize for that. But for too long, folks lie us have had to grope in the dark for answers and for better understanding of what we face, and why things just didn't work as well for us as for some other clubbies. So that is why I do this blog.

On a somewhat different note, I think I better understand why so few of you dear readers have wanted to tell your own stories. For me, its been the focus of a significant part of my work life, as well as my daily experience. Plus, I do a lot of writing, so I have few inner prohibitions about being open on this issue of being a clubby. But I suspect many of you have had what I also had - lots of negative input - teasing, maybe bullying, and the constant reminder of your feet making you "different" than your peers. So I'll try not to pester you anymore for your story. If you wish to share, it is certainly welcome, but if not, that's fine, as well. The last thing I want to be, to other clubbies, is a pressure from yet another direction.

So, Happy Thanksgiving. Enjoy the meal, and your friends and family. And thank your feet for carrying you this far, so far. It wasn't their fault, and it isn't yours. It's just what we were given, and we can't be blamed for that.

And as far as I've been able to determine, there is no such thing as an eye bone. There is, however, the occasional sharp stick in the eye, of which I have a wee bit of familiarity.

Prolo, Slobbo, Wacko - or - How I Stopped Worrying, and Learned to Love the Bum

Well, just had my next prolotherapy session, and I have something interesting to report to you, faithful reader! Its starting to work! My knees are doing better than they have in nearly a year, and my recovery time from the latest treatment was about two days. It helped, of course, that my doc used some acupuncture this time to significantly reduce the pain (helped along of course by some major pain meds prior to the treatment.) I face one to two more sessions for the knees, but the feet are just at the start of the process.

They are taking longer to recover, but then, the nerves in y feet are so hyper-enervated from decades of chronic pain and swelling that its no surprise. We are taking a slow approach, and doing a combination of regular prolotherapy, and neuro-prolo, which employs a larger number of injections, but not as deep, and with less dextrose per injection. The regular ones go pretty deep -they have to get to the inter-articular spaces to have the best chance of getting results. But if it gets similar results as I'm getting with my knees, then it will be worth the discomfort of the therapy. This stuff seems like the first real chance to see significant reductions in my chronic pain levels. I'll keep you all informed.

More About Muscles - No, This is Not a Tribute Column for Jack Lalane!

You may recall my post about issues related to deterioration of the muscle tissues in the gastrocnemius and soleus muscles, the muscles that comprise the calf. That there seems to be a correlation between the muscle atrophy associated with club feet, and subsequent changes later in life. Well, it appears such tissue atrophy also occurs naturally, as this abstract reveals. But it still doesn't fully explain the differences found between (otherwise) healthy individuals, and us post-clubbies. And since the only current studies related to this tissue issue appear to be done vis-a-vis cadaver studies, I suspect none of us really wants to wait for our own chance to contribute to such studies, if we have to wait that long, and be in that bad of a condition just to make it in the study. I know I don't.

It seems to me an excellent study could be accomplished through simple MRI comparisons. Recruit as many post-clubbies as you can to first have an MRI done bi-lateral lower legs, centrally focused on the calf region. Add to this circumference measurements at one-inch increments from the center of the knee to the medial malleolus (that knob on the inside of your ankle,) every one inch, bi-lateral. Finish it off with a surgical history re: club-foot Sx, and type/number of castings used for your "correction." Oh, yes - age - gotta have that, and maybe sex - we all like sex, don't we? You don't? Oh, sorry.

Now, this study would show prevalence, degree, and age/sex relationships against degree of tissue deterioration. This could then be cross-compared to the results in the above-cited study by Fujiwara K, Asai H, Toyama H, Kunita K, Yaguchi C, Kiyota N, Tomita H, Jacobs JV. in:

Changes in muscle thickness of gastrocnemius and soleus associated with age and sex.

So, any grad students out there looking for a dissertation topic? You come forward with your interest, and I'll help you recruit subjects. The nice thing is, this can be done as a collaborative effort with local orthopedists and podiatrists who already see such people who would qualify as subjects.

Well? What do you say? Any takers?

Ouch - Oh, You Know What I Mean!

Rough week. That last prolo session took a bit longer to recover from, mainly because we covered more ground, er, body surface area, I mean, that we did in prior sessions. So mostly I've been feeling totally arthritic - stiff back, knees, feet, shoulders, blah, blah, blah. If I'm sitting for as little as ten minutes, I creak when I stand up. Not too promising, ya dig? But I shouldn't really complain (well, maybe just a little) because I'm still working, still thinking, still doing my best to avoid all the hoo-haa in the nasty-political-shenanigans arena. Wake me when its over, please?

I met a young woman recently, who asked I not use her name, whose club foot has caused her great anxiety over both her mobility/activity levels, and her fashion-quotient. Athletic shoes do not make it at the clubs these days, apparently. (How did it come to this, where I hear words like "the young folk," and "what the kids like these days" coming out of my own mouth?  Sheesh. Completely over the hill, I am.) The gals like them shoes, 'cuz they know the boyz gonna dig 'em. And honestly? I have no answer for this particular dilemma. When I was still making shoes, I lost count of the number of women who would say something along the lines of, "I simply cannot wear anything with less than a three-inch heel."!!! And when I'd point out it was those three-inch heels (not to mention the 4, 5, and 6 inch variety) was more than likely the cause of their current uglified feet - all gnarly and arthritic, and pre-shaped for the pointy toes, well, they'd spit their snake venom in my eye and shout, "Just make the damn shoes and stop telling me what I want."!!

Now, they did have a point - it wasn't my place to tell them what they wanted. But, it was my place to tell them what they were likely to get, being that it was in fact their spiky pumps that made comfort highly unlikely. Women most often buy shoes for the imagined sexy punch it will give them over the competition. So much so, in fact, they seem willing to bear almost any pain or discomfort in service of that imaginary happiness. There's even a name for this "condition," - Algolagnia: sexual pleasure from pain. Note that this is different (albeit perhaps only in degree) from masochism, which is defined as the recurrent urge or behavior of wanting to be humiliated, beaten, bound, or otherwise made to suffer. So we can note the "bound," and the "made to suffer" as being the primary parts of algolagnia, with the added notion of sexual pleasure. Now, it might seem silly to make such a point of this - after all, how could something that brings pain (high heels, pinched toes) also bring pleasure? Well, if you are in fact a masochist, its a no-brainer. But for most women, the pleasure is not direct sexual pleasure, per se, but indirect, as the sight of those delicious little black pumps bring the requisite associations to mind, and thus, to the cash register.

So, let me explain the physics involved. Essentially, its plain old Archimidean plane physics - the incline plane, to be exact. If you stand on a hill, you will eventually slide downhill. Placing the foot in this kind of relationship to the ground requires the means to hold the foot in the most stable position on that "hill," which means narrow, pointed toes, to hold the foot back, and keep the heel of the foot within the shoe. The higher the heel, the tighter the toes - you really can't have it any other way, at least for the pump. Now, add laces, and you can make the toes wider, but laces are, well, let's be frank about it (unless you name is Joe) - laces are patently NOT sexy.

But for us clubbies, we either come to terms with not being sexy, or redefine what that actually means, and how we want to express that part of our very human nature. Because, like I told this young woman, you want to run the marathon of your life - that is, keep active for the course of your natural years allotted - you better stay away from steep hills. Lots of "sensible shoes" out there now look pretty damn hot, ya ask me! She just needs to quit worrying about emulating the Brittany crowd, and shoot for the Burning Man milieu.

Better tattoos, anyway.