Over there at www.clubfeet.net, there are a bunch of truly moving personal stories, of both parents of children with club feet, and of adults like me and you with post-club feet, and the struggles we deal with. But one of those stories, recently posted, really got my attention. Tom (http://www.clubfeet.net/story/981/) tells his story of long time pain, personal frustration, and being seldom understood by those without c/f. His story echoed my own in many ways, and I wanted to bring it to your attention.
It truly illustrates why it is so critical we shake up the orthopedic and podiatric establishments on the subject of post-club feet. I have been researching this topic many years now, and have yet to locate a specialist whose focus is on treatment for adults with post-club feet. We have all been subject to pediatric surgeries and treatments, been told we were now "normal," then cast into the world with no idea of how bad it could become, and no resources on how to effectively deal with what was clearly inevitable. Many practitioners who have dealt with some of our issues do so from a "one-off" perspective. That is, they look at the problem we present with as an isolated issue, unique to only us individually, and never as a broad-spread syndrome deserving further focused study, and a focused search for solutions.
I have said before, and will say again - as long as the pediatric doctors don't talk to the adult focused practitioners, there will never be sufficient progress into our issues. A phenomenon not seen is a non-existent phenomenon. But we live with these issues every day. They affect our physical and psychological well-being, the very experience of our daily lives. We cannot only be offered fusions, and addictive medications, or weak and poorly-informed attempts to apply orthotics without seeing post-club feet as a different issue than plain vanilla over-pronation, as one example. Post-club feet are both the same person-to-person, and different, at the same time. Without a focused effort to research this syndrome, and a clear acknowledgment that this syndrome even exists, it looks to many of us like we are on our own. This is especially hard to shake when considered against the backdrop of people with post-club feet who talk of amputation, or spending the rest of their lives in wheel chairs.
Not to mention a near-vacuum of response from the medical community. Maybe its time I yelled a little louder. And Tom? Get in touch, OK?
Monday, August 2, 2010
7 comments:
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ReplyDeleteI was born in 1962, now 48 years old. at 3 days old I had a series of cast every 2 weeks until 6 months, then I wore leg braces til 5. At 5 years old I had my first surgery with full leg casts. When I was 11 I had more surgeries and was in a wheel chair. I wore corrective shoes all through grade school. I did everthing to strengthen my legs, swimming, karate, gymnastics etc. My whole life I have had pain. When I turned around 30 the pain got so bad I couldn't even work. I suffer now at 48 with terrible pain. The pain now goes up to my spine and the way I walk has ground down some of my discs. I take loricet 10/600 and oxycontin 20mgs for pain and 2mgs of xanax to sleep at night but the pain awakens me quite often. Nobody understands how much pain I am in 24 hours 7 days a week. I just wish the people who don't understand could feel my pain for one day. Tonight I hurt so bad I was looking for people that had this horrible pain and for any answers. I am afraid to death of more surgeries hearing some of the horror stories I have heard. Pain has got so bad I have had thoughts of suicide but could never because I'm afraid if I did God would not let me into Heaven. All I do is pray every night that it does not get worse. I love my wife but she doesn't understand how bad I feel at times. I never wanted a child knowing I could not do all the things that he or she would deserve. I have almost no family left. I don't waant to increase my pain meds fearing it will make me to confused to function. It is a horrible thing to live with and if you know of someone with this problem, be understanding when they hurt. Keep praying at keep your faith up. Maybe some day they will find some sure fix in medicine, but now there is none. Your story touched me too Notumbo. Thank you for listening to my story and God Bless You. Tom
ReplyDeleteTom,
ReplyDeleteThere is no real way to end bone-on-bone pain except to stop walking, but that is hardly a reasonable option, no more so than amputation, or especially than suicide. We were not dealt a very decent hand, not merely the fact of our disability, but the way we've been essentially "written off" by the orthopedic establishment as a unique group with a clear, though difficult, syndrome.
But there are some ways that I have learned to get some relief, besides the drug route. The first is the use of an inversion table. Yes, you need to wear a pair of high boots, because you essentially clamp your feet into stirrups, but when you recline the table, and start to go upside down, you don't have to go all the way, just enough of an angle to take all the gravitational forces off your skeletal system). The effect, both on your spine and your feet/legs, is pretty much immediate - all the pressure on your joints just disappears. Yes, it only does this while you are inverted, but, and I cannot emphasize this enough, you do in fact give your body the rest it's been denied for so long. If you can use the table once a day, for 10-20 minutes, it makes a very distinct difference. I sleep better every time I use it, and I find that if I use it regularly, I have more distance available to me the next day before the pain returns in force. I have spoken about these tables before, and I urge you to consider exploring at least finding one to try. There are several different kinds, and you can see several of them on Amazon, to get an idea of how they work, prices, etc.
I am intimately familiar with the despair that can come with the constant pain, the limitations on the life I wanted to live, the way others don't really "get it." I have also battled depression due to all of the above factors, and until I finally went to see a psych to get evaluated for that depression, I thought about many similar things that you have. I strongly urge every clubby who is down in the bottom of that pit to seriously consider finding real help. The medications I have taken, once the right type and dose was figured out (it's different for everyone, for a variety of reasons,) has made a truly significant difference to the overall quality of my life. Yes, the pain is still there. But I am no longer the pain - the pain is an artifact of the problems with a part of my body. It does not prevent me from feeling down, it just keeps me from staying down there, and feeling like I'll never come back up.
We are a part of a select club, you and I, and we need to try to help each other learn to deal with the effects of being in this club. None of us can do this alone, and no one of us has all or even necessarily the correct answers. But the fact is, the doctors most certainly don't have the answers, either, and until and unless they get off their collective asses and start to really work on our issues seriously, well, its up to us to do it for ourselves.
At least that's the way I've come to see it. Unless we help ourselves, well, you know what that means, eh?
You aren't alone, brother.
Thank you for the tip on the inversion table but I have a problem why I can't use one. I had to have my sigmoid colon removed and had a colostomy and developed 2 stomach hernias. Then 6 months later I had my colostomy reversed and my hernias patched. I now have another stomach hernia and I always have tendorness up and down and side to side. Any pull on my stomach is very painful. Even without the newest hernia I have alot of stomach pain. Each operation I was in the hospital 8 days. I don't even want to go back to get the newest hernia fixed because that is the least of my stomach pain. Usually I am a happy person and learned to live with the pain, but lately my feet hurt so bad I can barely where my slippers. I only where shoes (soft walking shoes) when I leave the house. If you have any other tips I sure would like to hear them. Thank you for the quick response and God Bless. Tom
ReplyDeleteThe other option for bone on bone pain is FUSION surgery. I understand that the politically correct version of clubfoot treatment on this blog is to suffer horribly and avoid doctor advised surgery at all costs. But I am living proof that fusion surgeries can be very helpful for long periods of time. My triple arthrodesis was done 35 years ago. The ankle fusion was done 30 years ago. I am not in constant pain. I have had at least 15 to 20 surgeries (depending on how you count them) and AFO's, corrective shoes, the works. I came to these "support group" sites 5 years ago when I was recommended to have a heel reconstruction surgery and was looking for others with similar experiences. There were no others with similar experiences. You don't see postings from folks who have successful experiences with clubfoot treatments. Maybe they are not suffering and don't seek input from others. The folks who post here are in CONSTANT PAIN. I suggest that maybe it isn't a good idea to get medical advice from a BLOG. Go to your doctor and have diagnostic exams done on YOUR feet, knees, hips, back and neck. Look at the results yourself and use your brain and logic. Get second and third opinions until you are satisfied within yourself that you are on the right course. Blogs are useful for documenting experiences, not diagnoses. Trust your instincts and common sense. If your joints are operating on no cushion or lubrication they are FUSING themselves SLOWLY and PAINFULLY. To advise others to suffer through that is riduculous and MALPRACTICE as much or more that the orthopaedic doctors under attack on this blog. I will not remain silent. Notty, I am sorry you are so angry. Please don't encourage people to be in pain to exact your pound of flesh against the medical establishment.---Denise
ReplyDeletetypo, ankle fusion done 20 years ago
ReplyDeleteDenise,
ReplyDeleteFirst off, I have never told anyone NOT to have surgery - I have merely, and quite correctly, suggested looking at ANY suggested surgery with a very cautious eye, ESPECIALLY fusions. That yours have worked for you is good for you, but the literature, and having worked with many individuals who have also had fusions show that what seems like a good idea, especially the triple arthrodesis, has a distinctly specific outcome, as you yourself found out when you later had the second fusion. Read the literature.
Second - you are right - there are very few people coming to this blog, or to the various support groups, who had excellent outcomes. I am not speaking for them - I am speaking for, advocating for, those of us who DID NOT have "excellent" outcomes. We are in fact in pain, and if you actually read most of the comments from readers here, you will see a distinct pattern emerge - of how many of us have had multiple surgeries, without things getting any better. In fact, they tend toward getting worse. If you seriously think I am interested in remaining in pain, or advising anyone else to do so, then you haven't been reading much of this blog.
As to the point of whether people should be getting advise on a blog? Well, there are in fact many blogs that dispense advise everyday on the web - some good, some not so. But there is a distinct difference with what I try to do here - to advocate and agitate to the medical establishment to start seeing people with post-club foot syndrome as something more than one-offs. We in fact have very distinct issues AS A GROUP, but the medical establishment seems to view us as some kind of medical anomaly, instead. As someone who has worked for many years WITHIN that establishment, I know whereof I speak. If that makes me guilty of malpractice, its clear you misunderstand what that is. Nowhere on this blog will you find me telling anyone what to do, but rather, sharing what I have done, and what others have done, to help ourselves when the medical establishment has failed us. Further, if indeed you read most of my posts, you will see that I actually DO suggest getting many second, third, fourth opinions, and to in fact seek such opinions from more than the usual orthopedic and podiatric specialists - to look at footwear, orthotics, to explore prolotherapy, just for a few examples.
And one more thing - I seek no "pound of flesh," I seek a change in the medical establishment's approach to our issues, just as the AIDS community did and continues to do, just as the folks with post hip dysplasia syndrome are doing, just as many people, whose medical issue has fallen between the cracks, have been forced to do to get the attention to their issues that is clearly deserved.
Oh, that the folks here are in constant pain? That's usually because the medical establishment has no answers for them. If you are finding answers, again, i suggest you are not representative of the majority of clubbies, and while I am glad you have found your own answers, many have still not found even partial ones. I don't claim to have or try to provide answers, just share what works, so folks can decide if they want to try it themselves, and urge others to share the same way. I hardly think that rises to the level of malpractice, or even practicing medicine without a license. In fact, I haven't said anything on this blog (except for calling the medical literature into question) that doesn't already exist in many other forums all over the web.
Am I angry? Oh, hell yeah. And from what I've seen, and been through, and heard others go through, with great justification.