Tuesday, June 1, 2010

The Pains of Club Feet

Pain is a funny thing - everyone hates it, but it serves a critical purpose. Without pain, we would not know when to stop, avoid, refrain, etc., from doing the very thing that causes the pain. This is especially the case in a diabetic, for example. As many people with diabetes are vulnerable to peripheral neuropathy, essentially, the loss of their sensory nerves in their feet and legs, they lack this critical feedback mechanism. This makes them susceptible to the formation of ulcers, that, if left untreated, can lead to amputations, and even worse complications.

For those of us with club feet, pain is both a motivator and a de-motivator. We want to do all the things our family and friends do, all the things our jobs demand of us, but as time goes on, we find it more difficult to ignore our pain. We may seek out other surgical solutions, start to use pain medications with greater frequency, stop doing all the things we love to do, try other mechanical responses to the pain. We risk addiction with the pain meds, less-than-hoped-for results from the surgical procedures, or disappointing results from the mechanical modalities. We may fall victim to some of the myriad quack solutions as we become willing to try almost anything to alleviate this chronic pain. We also risk depression, and loss of faith in solutions of any kind.

There is, however, a mind-set that can help get through this dark night we often find ourselves in. This mind-set is constructed of several elements. First, don't give up. This is critical, because without it, we can in fact succumb to addiction and depression, and quite honestly, neither are solutions, merely additional problems, and potentially more destructive than the pain itself.

Second, be willing to try some things again, but from different approaches. That pair of orthotics didn't work? Try a different podiatrist or orthopedist for the evaluation and/or casting, and try a different orthotic lab for the devices. Not all professionals have the same skills or sensitivity to the particularities of club feet - in fact, few truly do. Or pain meds - if the type or combination's you've been using aren't doing the job, or are screwing up your ability to function, ask your doctor to recommend a different approach. Be willing to try alternative approaches - acupuncture, which has a long history of success at pain reduction; massage (don't be afraid to tell your massage therapist how to do the job right on your feet - you know better than they do what works, and what hurts;) Self-massage - I use a device called the iSqueeze, a really remarkable foot massager - not cheap, but see it as an investment in your long-term comfort. Some medical plans may cover such purchases, if you can satisfy their demands for proof of need (and I suspect you can.)

As for surgeries - this should always be your last resort. Foot surgeries for post-club feet are usually a speculation on the part of the clinician. The truth is, many soft-tissue surgeries on adults have long recovery periods, especially tendon surgeries. They require extensive and religiously attended to physical therapy for the best possible outcomes. This means at least doubling the amount of recovery time most surgeons say will be necessary - they want you to feel confident, so they tend to understate the time require for complete recovery. Don't take my word for it - go talk to a couple of physical therapists. They are the professionals that get to see the failed surgeries as much as the successful ones. And talk to others who have had the same procedures for the same issues. You will find as many successes as failures, which should be an indication that your odds for success are about the same, regardless of what the surgeon would want you to believe.

There are many kinds of pain associated with club feet. Some of us have pain in the sinus tarsi region, deep inside the subtalar joints. We may describe it as "bone pain." Some have recurring cramps - in the arch, the calf, even the toes. I have one kind of pain I haven't been able to ever get a satisfactory answer to. It occurs occasionally, thankfully. It feels like my lower legs become "heavy," almost as if the circulation is being blocked, which may well be the case. Given that most club footers have some amount of muscle atrophy in the calf and feet, due largely to all that casting and bracing, it seems reasonable to assume our blood vessels are also somewhat proportionally smaller, and thus prone to "sluggishness." I am also certain there are other types of pain, other degrees, locations, triggers , and more.

With that in mind, what is your pain like? Where, under what conditions, how acute or how chronic is that pain? What do you do to alleviate the pain, and what works best for you? Do you employ massage, and how does that work for you? Foot adjustments? Foot soaks? Ultrasound? Share your solutions with the rest of the club foot community. You have nothing to lose, and many things to gain!

124 comments:

  1. My pain is hard to describe and hard to define. Much of my pain is not from my condition itself, but from my ignoring the condition. For example, until recently, I bought shoes is women's size 5, wide. My foot is not that size, but it is the closest available size for my footwear needs. These shoes do not fit and cause me pain.

    The pain that I do have comes and goes. When I used to run for exercise the pain was not immediate, but delayed for a few hours. I would become extremely stiff in the ankles and almost unable to walk. Now my pain comes and goes. Not really sure what triggers it or what mechanism is causing the pain. Sometimes I take advil, but usually I just ignore it.

    I have tried soaking my feet but it doesn't seem to so anything but make my feet wet. My newest approach is custom shoes and orthotics and I will be sure to post how (if?) that helps.

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  2. The pain that I have now is related to arthritis. I try to keep hydrated and moving. If I'm miserable, I take Advil. There is not one prescription pain pill in my home. I have never taken anything that didn't just make me "stoned". Advil actually takes my pain away.

    I also have muscle spasms in my toes. I use counter pressure until the spasm releases.

    I have some sort of pain every day somewhere in my body. I have lowered my expectations of living pain free and just cope with it. The pain very rarely keeps me from doing what I want to do. It doesn't hurt that I am an extremely stubborn person and I have determined this will not alter my life anymore than it already has.

    Other than Advil, I have never found anything that has been helpful. I have tried orthodics which caused alot of back pain. That experience has postponed trying custom shoes for me, I don't want to go through that again.

    I am curious to hear other's experiences.

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    1. I know this sounds strange, but have you considered using medical cannabis?

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    2. I have so much pain in my body, from the lower part of my back and hips all the way to the soles of my feet. due to the difference in length of my legs after club foot correction as a child. My case required casting and 4 surgeries. Today, my right hip is over an inch lower than my left hip; my chiropractor says I have dysfunctional scoliosis and severe arthritis with bone spurring in both hips).I also have degenerative disc disease, neuropathy, and permanent nerve damage. I have tried cannabis for medicinal purposes, but it didn't help much at all. I did, however, finally feel like eating despite the pain. I do take prescription pain meds but since I've been on them for so many years, I have had to accept the fact that I will never be pain free, and no amount of pain pills will make me feel great, they just help me to deal with the pain.I refuse to take so many pills that I am in a stupor, but I am not going to go without them or I won't be able to function at all. I am a waitress by day and a mom of four so I have to do what I have to do. I do think that medicinal cannabis is worth a try as I know many people who have benefitted from it greatly. It's a little more natural "herbal" remedy for those who are reluctant to turn to other prescription meds. Don't force yourself to suffer needlessly out of fear of something you heard or aren't familiar with. Club foot isn't the end of the world, and pain is bearable if you allow those in a position to help you do so.

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    3. Dana, you really need to consider lifts in your shoe. Some can fit inside - usually no more than 1/4 inch, but the rest needs to be there, as well, on the outside, if you are ever going to find real relief for your back and hip.

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    4. I was born with a club foot 42 years ago. I recently was disagnosed with disc degeneration and nerve damage in my hip. I never ever thought the two could be related until reading this site. My podiatrist said it's impossible that the constant pain in the ankle associated with my club foot, could be related! WOW! And he's a doctor! I'm now wondering if all the pain areas I have aren't related to my club foot? I'm sure one leg is longer than the other and I do always, stand to one side to avoid putting pressure on my ankle that is always in constant pain! What a relief to finally get some answers! I've been dealing with the foot and ankle pain for over 20 years. The back and leg pain is more recent, around three years I've delt with it. Now, where to go from here? Who do I talk to that will listen and help? Doctors can be stubborn and only hear and believe themselves! HELP......

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    5. Anonymous - where do you live, what's your name. I may be able to point you to other resources. Please reply!

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    6. I'm currently 22 years old, I was born with club foot in on my left side. I've attempted many things, various braces, a few types of massage therapy, pain medications, and even went so far as to speak to a surgeon about amputation. I've got the classic (If they can be called that) Symptoms, Stiffness and lack of Flexibility at my ankles best, Soreness after about 45 minutes of standing or an hour of walking, then if I sit down it immediately stiffens up and causes pain for a few minutes as I walk it out. After about 4 or 5 hours on my feet, the pain starts to show constantly, and I often lie awake at night for a few hours trying to relax it. The next morning It's very difficult to walk with the pain until I can work it out again, and then it still sits at a dull pain for a few hours. I spend between 6 and 10 hours a day on my feet at work, which is very unpleasant.

      I've also begun to notice pain and aches in my Right hip, often very bad. Shifts in the weather have begun to affect it more, and no medication seems to be helping it. Advil helps with the swelling in my ankle, but not with the pain. I've occasionally taken off my socks (I pad two or three on my left foot to soften the impacts) to find bruising along the scars. As for the above statement of a bit more than a year ago, I would HIGHLY recommend looking into medical marijuana. When I was 16 I got my first job at McDonalds. School and work took a toll on my ankle, but my sister wanted me to give it a try. It actually does help quite a bit. It made the (Physical) aspect of the job MUCH more tolerable. I have since been forced to quit smoking, as my new job does actually drug test. I grin and bear it, with no plans to ever take another pain pill in my life.

      The last doctor I spoke to actually recommended that I apply for Disability, I was very insulted, and have never been back. 22 years old, working on a Degree... But I digress. If any of you have any clue as to another method of pain relief, please. let me know.

      Houseofhomie@gmail.com

      Also, I'm aware that this thread is 4 years old, but I've gone everywhere...

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  3. Denise,

    A question, re: the orthotics you tried. Who prescribed them - an orthopedist or podiatrist? And how were you casted or fitted for them? Were you given break-in instructions, or just told to wear them full time right from the start? All of these are important considerations for the success of orthotics, most especially when applied to club feet. If they are done correctly, you should expect fairly good, to excellent results. If done wrong, well, you know about that first hand!

    Notty

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  4. Hello Notty, love the blog!

    The orthotics were prescribed by my ortho. Podiatrists haven't been willing to touch me. I was stunned when I found club footers being treated, even surgically, by podiatrists. I was shown the door and told to return to my ortho, but I digress.

    I was fitted by stepping into a box of "foam" to get a true casting including all my nooks and crannies. I was given no instructions regarding break-in. By the time I got to the orthotic I was already fully fused and had been for many years. I was in agony with my back during that time. I had already been diagnosed with multiple disc problems and arthritis in my back.

    Also, my big toe, which is also fused at the second joint (from the age of 5) started to "roll" inward during that time. What used to be the top of my foot currently is the side of my foot. With the orthotic, I would randomly have pain in that joint that would literally take my breath away. I would have to stop and do deep breathing until the pain passed.

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  5. Denise,

    What city are you in or near? I may be able to find you a better-qualified practitioner.

    Notty

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  6. tryingto find a qualified practitioner , in or ne southwest virginia , can go toward roanoke va or winston salem nc pain so bad can not walk 40 years old post surgery club foot adult

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    1. Could you clarify the type of practitioner yoou are looking for? A podiatrist, and orthopedist? A shoemaker, and orthotist? Help narrow the search for me, OK?

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    2. Hi I am totally new here but reading all if these posts. I am 39 years old with post surgery adult club foot of both feet. I live in Charlotte NC and have a great doctor. I don't know if you would be interested in traveling that far? I have been his patient for 10 yrs now and trust him with my life (literally). He is dr Anderson and runs the foot and ankle clinic for ortho Carolina. I can't say enough good things about him. Hope this helps.

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    3. You see, this is the problem with folks doing that Anonymous thing - how can two anonymous folks exchange information? So, would Anonymous numero uno please step forward and introduce themselves to Anonymous numero due? Sounds like there's some good info here!

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    4. I don't know if you've had any luck yet, or if you'd be willing to travel a little farther into north Carolina, but if it's a trip you'd be willing to consider, try Duke Hospital. I was up for adoption before my birth. when I was born they discovered I had a clubbed right foot. All my treatment was coordinated through Duke Children's Hospital in 1971 by the Amran Shrine Temple and social workers. I wish I could say that everything's great, but I won't lie either. But I can assure you that some of the most awesome doctors on the East coast, and possibly the country, practice daily at Duke Hospital. I am not thrilled with the outcome of my experience, but I also know that they did the very best they could with the technology and training available at that time. If you do go, tell them BABY ANNE says hello and thank you for caring enough to try to fix it for me!!! :)

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  7. I love the blog because it is so me right now. I deal with pain every day, be it a twinge here and there to having to stop everything. I had corrective surgery when I was 9 months old on one foot and then further casting on both feet. I am now 25 years old and have learned to live with pain. I agree that we have to find the right motivators to keep us going and I think I found mine. I have a self-trained service dog. She is classified as a mobility aide but what she does is truly amazing, some of the things she picked up from just our bond together. I first started by just teaching her to help me stand up, acting as a brace just to ease the pressure off of my feet on those bad days. The next thing she did, she does on her own, while out on walks she will nudge my leg and stop, sure enough the pain starts within minutes. I know that we all know our limits but as we get older, they change, and my dog picks up on some subconscious clue that my body gives and she alerts me that my limit is approaching. Thanks to her, I can now have more freedom because with her I don't have to rush to get things done, I know that she will alert me when pain is approaching which gives me enough time to find a place to sit, rest my feet and go on with my day. I also have the traditional orthotics which do help, however; the combination of orthotics and an extremely amazing dog is the best thing I have had so far. Plus on those really bad pain days where depression sets in with feeling left out in the world, she is by far the best pick-me-up ever. Even my podiatrist and my original pediatric orthopedic surgeon are amazed by what she has been able to help me do.

    Ash (and Alice, the Hamiltonstovare service dog)

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    1. I love that!!!!!Dogs are truly amazing animals, and your story is so inspiring! I didn't even realize service dogs were available for people in our situation, but it does make sense. I mean, I know it's been discovered that dogs can alert seizure patients to an oncoming seizure in time for them to lay down and prepare for it-and the dogs are trained to stay right by their sides until the danger has passed, so yeah, it makes a lot of sense that they would be beneficial to post-op club foot patients as well. I have heel spurs in the same foot that was clubbed at birth, and when I take a wrong step, it hurts so bad I almost pass out. And yes, I have battled severe depression for many years now, and my psychiatrist told me that pets are very therapeutic for mental health patients. Thank you, again, Ash and Alice, and may you have many long years of togetherness!!!

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  8. Hello! I have a right club foot that was repaired by casting at birth and then 4 surgeries before I was 4 years old. I had to wear ankle high boots with a build up on the outside of the sole, then saddle oxfords until I was in junior high. I am now 63 and for the past 4 years have been struggling with the deterioration of my left leg and foot from being the weight bearing leg all my life. Now I am having pain with my club foot. I have very few styles of shoes I can wear. My best support comes from the New Balance line. I was in the ER yesterday due to not being able to bear weight on my club foot for the pain. The x-rays are a nightmare! Between the calcium build up and the arthritis, the ER doctor put me on leave from work until I can see an orthopedic doctor. I have been blessed and have not seen one for my foot since my childhood. Does anyone else have the calcium build up on the Achille's tendon and the ankle? My achilles tendon looks like another fibula bone. Thank you for this site. Janice

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    1. I was born with a club foot, my mother said the foot got caught under my right arm causing this, but after casting and braces and mores surgeries at the age of 16 my foot was fused leaving only the toes with little movement and was told cured go do anything you want and wear any shoes you want. Which I tired but when one foot is a size 4 and then other a 6 1/2 was hard so I just used insert and cotton to stuff toes when dressing up. In 2012 has to have my left knee replaced, first a torn meniscus which lead to my leg turning in and making it harder to walk with my foot being fused I ask the dr what would this do to my foot and of course not his area. anyway that led to a total knee replacement. Now because of the knee my foot is in constant pain, went back to Campbell's clinic in Memphis where I had gone as a child and the dr suggest a lift in my shoe, fitted and tried wearing for about 6 months and it created a hole in the scar on top of my foot dr said not much he could do but wanted me to buy his pain cream for $480 and I could not afford. Left leg is smaller Is there any dr in the Nashville Tn area that I could go to?

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  9. To both FilmScored and Anonymous - first, I am glad you found this blog, and hope it helps at least get real information for you. It helps even more if you lead your doctor here, as well - they have little real information about long-term outcomes for us clubbys. I have been trying to inform the medical community for many years on our issues, but it's often like smacking my own head with a hammer - painful, and clearly not helping the matter!

    Second, please explore all of this blog - there is a lot here, that deals with solutions as well as the problems. Third, if you are not already there, come over to https://www.facebook.com/groups/24892886820/?bookmark_t=group on Facebook, the group for adults and teens with club feet. A great group - lots of support, connections to other clubbys close to where you live, and solutions and resources shared freely! Hope to see you both there!!

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  10. my pain is unbearable toe pain arch pain cramps stiffness and sharp shooting pain in what i call my hole its the indented place where tthe bones are missing at the base of the ankle where to foot reconnect he pain is insane i dont know if where the pins pinched a nerve or what but i cry on a daily basis and not one medical professional has ever give 2 shits where do i go what do i do i have honestly thought about shooting it with a 9mm and forcing them to fix it

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    1. Been there, Bill. I have often said I wish they'd just amputate it and get rid of it...but there is this thing I've heard of in other amputation cases called 'phantom pain', where the amputee still feels excruciating pain when there's actually nothing there anymore. That would make me even more miserable than I've been on my worse days, so I don't think I'd choose that even if it were an option. Frankly, my psychiatrist was awesome about getting me into a doctor for pain management. He said that I would never be able to reap the full benefits of my mental health meds as long as I was in that much pain, and he made the right phone calls to get me seen quickly, and with some relief. It doesn't mean you're defective or anything like that, and if it works, why not try it. If it doesn't work, you haven't really lost anything either.

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  11. Well, I'd caution against the 9 mm - they'd have no choice but to fuze whatever was left, and that would leave you with even worse options. Have you ever had custom shoes and orthotics? If not, let me know where you live, and I will see what I can find for you in the way of skilled resources. And consider joining the facebook group, https://www.facebook.com/groups/24892886820/?bookmark_t=group for adults/teens with club foot - great bunch of folks, lots of support, and bad puns galore!

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  12. I am 22 years old born with severe bilateral clubbed feet. Surgery at 6 months. Up until I was 18 I had no problems, captain of the swim team, worked 2 jobs at a time, and then I sprained my ankle. Now its a struggle day to day wondering how bad I will be hurting of if I will be able to walk. The pain is outrageous and nothing helps, literally nothing. I have tried literally everything from asprin to oxy and no relief. I haven't been able to work due to the lack of jobs that are appropriate for my body. I worked at lowes last summer for 5 weeks because I needed money and suffered nerve damage in my heels and "ankles" after two weeks. Due to that, now the pain has gone from just my feet to shooting pain up the outside of my leg and my hips are now suffering because of the way I have to walk/limp/hobble around. So now I am living day to day, severely wanting to give up. After everything I have ready and people I have talked to, even surgery doesn't help and in turn you just have to have more. What a miserable existence, an able body on my way to cripple by 35. My dad thinks I need to "walk it off" but for those of you who know, it doesn't work like that. At least I have my fiance, the real back backbone of myself. He piggy backs me around the house when I'm hurting, amongst other things of course, he is just wonderful. But, how do you deal? How does anything make it better, oh thats right, there is nothing other than just dealing. I am sorry to those of you that don't see your deformity as a problem, but it is. It is a hassle everyday of my life. I can't go grocery shopping without hurting. Please excuse me for ranting, I am having a really hard time.

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    1. Merissa, my heart definitely goes out to you. I wish I had found this blog sooner. I had no idea until a few minutes ago that it even existed.I definitely know just how you feel. My pain was so minimal and infrequent for so long. I was born in March 1971 with my right foot clubbed, and casted until I was 10 months old. After 4 surgeries and lots of physical therapy, my parents thought I'd be good as new from then on. It sounded good in theory. The main pain I had at the beginning was the occasional ankle sprain or fracture when I would get too cocky and step wrong. when I was thirty five I had my fourth and last child, Emily.Within the first year of her life, I started falling apart. Now, Emmy's 7, and I walk like I'm about 82 instead of 42.But I did luck out and find a great man who loves me and tries so hard to understand what I go through and is constantly asking how he can help me or what he can do to make it better. Don't be afraid to accept the emotional support and love, and don't give up. I have days when I tell my fiancée that I just don't think I can handle another day of it, and I wanna just die so I don't have to hurt anymore...but then I realize how bad those brutally honest words hurt him and Emmy and I know that giving up isn't the right choice for me. It probably isn't the right choice for you either, sweetie.I will say that some days are better than others, and I am so happy that this page is here for women like us.just trust me when I tell you that you will have better days.

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    2. I also was born with bilateral severe club feet and surgeries started at 6 months casts at birth. I did the braces and had my last operation at age 43. I am now 48 and I had and continue to have severe pain, swelling. I work on my feet most of the day, in steel toe/shank shoes so for pain I hear you.......but it has been a part of my life forever. My feet are always on fire.....they burn so bad, I was getting cortisone in my talus for about 8 years with some relief but it became unpredictable so I gave up. Merissa, I hear you and I too get frustrated and really would trade my feet for almost anything, but for me this is my reality.....I wish you the best and hang in there ....hugs

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  13. Merissa, sorry to hear its so bad already for you. For some, it hits a little later, for some, right off the bat. One thing I can offer right away is support, both here, and over on Facebook, at https://www.facebook.com/groups/24892886820/?bookmark_t=group or adults/teens with club foot. More than 300 other clubbies from around the world, all who truly "get it" even if others don't. Werner will be glad to let you join!

    As for solutions: there are many here on this blog, so please spend time looking around, there's really a lot here. And where do you live - country/city? I often have luck helping folks find better resources in their area, so please let me know.

    And tell the folks on the Facebook group Willy sent you! Just know - you are NOT alone!

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  14. I had surgery at birth for clubfoot, and I am 30 now, with chronic pain in my right foot. Theres days i can not put pressure on my heel, my right toe is numb, and I can not find any DR. that wants to fix my problem. Feel hopeless.

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    1. Nicole, where do you live? I may be able to help you locate someone better suited to dealing with your issues. Also, are you a member of the Facebook group, adults/teens with club foot? You can see it at https://www.facebook.com/groups/24892886820/?bookmark_t=group and just ask to join - all clubbies are welcome!!

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  15. I am happy to have found this site for my mom who developed an adult clubbed foot from several surgeries. She has a history of osteochondromas that form on her feet and she also had her 5th toe and bone removed. Once she had this done and was non weight bearing and with a cast, the cast was on too long and she felt it move or snap but the podiatrist did not respond. However, she still goes to the same doctor and has had many surgeries. She now has no driving privileges for about 7yrs now, and is only 63yrs old. I feel so bad that she has been through so much and keeps her faith and sense of humor. She wears a brace and shoes that are custom made with many adjustments. She also had a tendon transfer that is wearing and starting to give her problems with the other foot. I hope that there is an answer for some the pain and someday a surgeon or person to come up with a solution for those like yourself with this debilitating problem. I wish you all the best of luck and if you have answers or feedback, with pain management solutions, please let me know.

    Thanks again,
    Karen NJ

    you can email me personally at Rickynlucee@aol.com

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    1. Karen, (and I will also send this to your email) I am so sorry to hear how much your Mom's been through. You might want to suggest she joins the facebook group, as well, at https://www.facebook.com/groups/24892886820/?bookmark_t=group where she can feel right at home with hundreds of other clubbies from all over the world. Great support, advice, and humor. We clubbies are a tough bunch - we have to be to deal with the levels of pain many of us deal with daily. And have her explore this site in depth, as there is lots here about dealing with chronic pain.

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  16. Hi,

    I am 34 and was born with bilateral clubfeet. My left foot did well with splints but my right foot has always been badly behaved. From age 10 week to 14 years I had multiple surgeries, each correcting problems from the last, such that my foot is now twisted the opposite way to when I was born.

    I've always had a bit of pain, getting progressively worse over the last 10 years. Recently it was been keeping me awake at night, and distracted during the day.

    I currently wear a brace and special shoes and it is helpful but is losing effectiveness rapidly.

    I have an appointment with an orthopaedic surgeon later this week, and find this vaguely terrifying.

    I find nurofen/voltaren have very limited effects on my pain, panadeine forte sort of helps, but makes me even more dazed and has other side effects that aren't desirable.

    For ages I've toughed it out, but its getting very hard.

    Has anyone had surgery has an adult and found it helpful?

    Em

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  17. I am 32, and I have been putting off the pain for a dew years now. I had reconstructive surgery at the age of 21, hoping that it would help.... I do not want to give uo my sports or my daily routines, but the pain is getting unbearable. My wife is a nurse and soes not want me to see a pain specialist, but to be honest going through another surgery like the last one is not an option...any thoughts?


    Jon P

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  18. WOW...I need to proof read....SORRY

    Jon P

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  19. Jon, first, are you a part of the adult/teen club foot group on Facebook? If not, I strongly urge you to join - lots of support and good clubbies all over the world - you may even find someone local to you.

    Second, spend time reading other parts of this blog - I address pain management in many ways. Clubbies usually learn that it takes an entire arsenal of techniques, and most seem to come to the conclusion that meds, especially the opiates, are not the way to go. I know that I only use the strong pain meds when it hits a 15 on the pain scale, and never more than once a week. That is the only way to gain some benefit without having to also deal with addiction issues. Use as many other techniques as you can - ice, heat, elevation, make sure your shoes are well-balanced. consider having rocker soles added to your shoes, Tiger Balm or other lotions/ointments, foot massages - there is a host of techniques, and you have to experiment and find the combination that works best for you, then make that a part of your daily life.

    I have had to cut back on my physical activities a lot in the past three years as my PCF has gotten much worse, even doing all the right things. I have come to believe this is because of the aspect of CF that the doctors are completely ignorant about - the seriously misshappen muscle fibers we clubbies have in our lower leg muscles. This deformity, CF, is not merely a positional deformity - there are other neuro-muscular elements that have hardly been explored, despite a research study done a number of years ago on cadavers post and pre-natal where the muscle tissues were examined and were seen to be misformed - uneven and much shorter cellular fibers than in muscles of so-called normal muscles. I have begun to suspect that we will see more clubbies, as they age, have similar deterioration of those muscles. I even suspect that children treated today with Ponsetti technique will experience the same thing, because despite Ponsetti being a better alternative for positional manipulation, it still does not address the other aspects of CF syndrome.

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  20. Hi
    I am 28 and had surgery to correct a club foot on mt left foot at 9 months. I had the tendons and ligaments cut.
    All was fine (apart from ocassional pain) until a few months ago when I notices I had reduced movement in my ankle. I try to move it evefy day and rotate it but I'm in constant pain even after taking painkillers and anti inflamatories.
    My mum thinks that the tendons and ligaments are tightening up.
    I'm worried that this will now have a detrimental effect on my mobility for the rest of my life.

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  21. Louise,

    You should consider getting custom foot orthotics, and possibly having at least one pair of athletic shoes modified with rocker soles. This will help properly balance your feet and reduce excessive ankle motion, which will add many years of use to the ankle and the subtalar joint. But to answer your question, you may indeed have more deterioration as you age, as many clubbies do. This is not a result of the surgeries, necessarily, though sometime the surgeries, if they develop too much scar tissue, can contribute. It is more due to the other aspects of club foot syndrome that the surgeries do not and cannot address, such as the muscular atrophy that is part of the congenital nature of TEV. This atrphy seems to not be a steady-state situation, but something that can cause further weakening of the muscles of the lower leg/s over the years. This muscular weakening places more strain on the knees and ankles, as well, and may lead to additional problems in those joints.

    Wish I had better news for you - at 60, I am living proof that the term "correction" is a lie. All they really succeeded in doing was re-position my feet. The rest of the CF syndrome is going strong.

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  22. My husband was born with club foot and I try to be supportive but he seems to be shutting down from dealing with this pain and unwilling to look at alternative options for help, due to unsuccessful previous experiences. He has mentioned amputation. Is this what it comes down to? I want him better, with a more positive out look, but I fear he will become heavily crippled by 35. What are the options? I need help! I support the amputation, but not as a first and last resort. I support it when there truly is no other option. Please, give me options!

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  23. I completely understand where your husband is coming from, as do most clubbies, Kat. We experience the kind of chronic pain that is mostly unrelenting and grinding, even when we are asleep sometime, if the day was particularly intense. And while there are palliative solutions - that is, temporary and partial - a few clubbies have chosen amputation, and frankly, if I were younger, I would make that choice. It's much less a solution when you are older, as your healing potential is greatly reduced. But consider asking your husband to join the adults/teens with club foot Facebook group, where he can read about how other clubbies cope, and where he might feel more a part of something where he will be understood. Just have him come over to https://www.facebook.com/groups/24892886820/?bookmark_t=group and ask to become a member - Werner, the group's founder, will get him involved right away. Or, he can just lurk and read the posts. Sometimes we are serious, sometimes not, but always, supportive and understanding.

    And, have him try to read some of the stuff on this blog - there is a lot here about solutions that work for some, or at least make the pain more bearable. Let him know he's not alone - there are clubbies everywhere!!

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  24. My 12 year son was born with bilateral club feet and had surgery at 9 months old. Recently, he has started having pain in mostly is right foot. You can actually hear it "pop" sometimes as he walked and he says it hurts when it pops. I took him back to the Shriner hospital and they had him fitted with shoe inserts and said probably increase in pain was due to a growth spurt. I was told to put him on Aleve twice a day and give the inserts a try for 3 months. I was told that he will have some sort of pain his whole life and that the goal is for any improvement in pain relief.
    I wasn't really satisfied with their response; however, after reading the post of this and other blogs it seems what they said is reality. It saddens me as a mother not being able to do something for him to relieve his pain. He has been in such pain at times he misses school and it hurts him to walk.
    I have requested to join the facebook group, even though I am not the one with clubfeet, I feel it will be beneficial in helping me help my son. I will also ask him to join as well.
    Can anyone help with the "popping" my son experiences?

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  25. Regina,
    Without seeing your son and watching him walk, I can only make a guess at the source of the popping. But similar experiences I've had at least suggest his cuboid bone is "subluxing." That is, it is slipping in and out of joint - dislocating, in effect. The cuboid is the easiest bone in the body for this to happen with, and the longer a foot is in a maximally pronated position, the easier and more likely it is that subluxation will result. Getting a properly made pair of custom foot orthotics is the best way to slow or possibly resolve this compensatory mechanics he is experiencing. The problem, sadly, is that most doctors do not understand "modified" club feet very well, and have a poorer understanding of how to make and apply orthotics for such feet. Can you tell me where you live? I may be able to point you to someone with better skills. Let me know. And do invite your son to be a part of the FB group, as well. It will help him immensely to see he is not alone in this battle. We have all been right where he is, and many of us for decades, now.

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    Replies
    1. Thank you so much for the wealth of knowledge you've chosen to share with all of us. I have often wondered what that God-awful popping was and what caused it. As I said in an earlier blog, I'm a 42 year-old waitress, and after a 6 hour shift, my right foot will 'pop' right below my ankle and just above the scar from one of my multiple surgeries. It is excruciating when it happens, and as it gives no advance notice or warning, I have come close to peeing on myself from the sudden pain. It almost feels like the bone is about to come through the top of my foot at times, and I don't like to cry in front of my daughter or my fiancée, but at times like that, I can't help it. My heart goes out to anyone who has to deal with that on a regular basis. And, truly, I have never found anything that helps me to deal with that.

      Delete
    2. Dana, it sounds like your joint is subluxing - this means the joint is dislocating a small amount, shifting away from the proper alignment of the articular surfaces of both bones in that particular joint. And given your leg length discrepancy, and the fact you have never - from what I can tell by your posts, at least - tried lift therapy, this is not surprising at all. Again, you really need to begin adding some lift to the shoe on your short, clubbed side. Not the full amount at first - perhaps 1/4 to 3/8" initially, then more over time, as your body adapts to the change. I would continue seeing a bodyworker or chiropractor while working up to the full amount, as this will aid in changing your body's compensation back in the right direction. But the longer you go without adding a lift, the more your body will continue compensating in the wrong direction.

      Delete
  26. Hello! Post clubfoot (both) here. I had the absolute lck of having my release surgery done by an amazing doctor and have managed to do reasonably well throughout my life. The only difficulty I seem to suffer with is the inability to stand on my feet for extended periods and the pain that results from that process. I was wondering if anyone else had this problem and had any suggestions of possible orthotics that might help. Thanks!

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  27. I have had clubbed feet all my life. Ive had casting on both feet untill I was seven moths and then several operations until age 27. It is very debilitating and I've almost gave up on everything I've tried everything like shoes inserts etc. I am in pain 24/7 .I have Been in rehab seven times from being addicted to pain meds from getting no relief. Now I have nueropathy in both feet and legs.not only is it painful in my feet but a lot in my back too.I have arthritis. A lot of people don't understand how hard it is and I wish I could do things everyone else can do like going on long walks but I don't get out much anymore it has made my life hell.I haven't even worn shoes since 6th grade because of the different sizes in my leg muscles and feet.when I.was born doctors said it was one of the worst cases they had ever seen. Its painful physically and mentally bring different being stared at made fun of it just really has a a bad impact in my life and I'm really sick of having to live like this. My doctor sucks he just wants me.to keep comming back to him and feeds me Vicodin and being the addict I am ofcorse I take them. Now my liver is a little messed up but he doesn't care seems like its just hopeless anymore.don't know what to do.

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  28. I meant I haven't worn shorts not shoes. Typo

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  29. Well, Joshua and Mary, glad to meet you both. I strongly urge you both to also come over to the facebook group, https://www.facebook.com/groups/24892886820/?bookmark_t=group where you can meet many more clubbies, and maybe even connect with another clubby in your area. And there are many solutions here on this blog, and shared generously on the FB group, so there's no need to feel alone any longer.

    As for orthotics - the best ones are the ones custom made for your feet. We clubbies do not have "generic" feet, and so generic orthotics just don't cut it for us. I suggest finding a biomechanically-trained podiatrist to work with.

    As for the drug question: as you are learning, they don't really work, and just mess you up in some very bad ways, so learning other ways to manage the pain is critical. Some clubbies who have found it impossible to deal with the pain any longer have opted for amputation and going with prosthetic feet, and they report a major improvement in the quality of their lives. But if you are an older clubby, that's not a very good option.

    But do read more here, and do join the FB group - both will really make a difference for you!

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  30. Its nice to finally talk to others who understand what its like to have clubbed feet. As for the amputation there's just no way I am only 31.I would like to think that somewhere there is a doctor that knows what he is doing unfortunately I have yet to find one and with my insurance its very difficult to get the help I need.I don't know why I was born this way to this day it makes it hard to figure it out especially. Because I have a cousin w club feet but her are not even noticeable and were fixed w casts. Another factor is my father was in Vietnam and exposed to tangent orange which in studies I have found that babies were being born with clubbed feet.I have tried orthodics made for my feet and they still didn't help.I just don't understand with the technology out there these days that they can't fix my feet its very frustrating. One of my legs are also longer then the other which puts all of my weight to one side of my Jody. Almost feels like the bottom of my back is jammed together. I'm going to keep trying to find someone who can help me instead of just cutting me open and using me as their Guinea pig.

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  31. I am 20 Years old, and I am starting to experience some annoying pain and stiffness in my right ankle. When I was born I had surgery (pins and all) to realign everything, then the Ponseti? Casting series a few months later. (Sorry I don't know exact details). I had those horrible wooden shoes til I was 6 also. After all this, the doctors said that I was good to go and my parents got me into sports and physical activities. I had little pain as a child but I did have a small calf muscle which bans me from being able to jump on one leg or go on my tip-toes. I worked around it and continued sports up into high school where I played basketball and lacrosse.

    Then 3 years ago, I woke up every morning with my ankle so stiff, I couldn't walk, and a pain deep inside like there was something stuck between the bones. I was told to walk it off and wear an ankle brace if it was really bad. I ended up quitting sports when the pain and brace, had me blow out my right knee.

    Currently, I try walking or hiking every day, but I will still feel the pain and instability. I don't even try running, it only leaves me aching for days after. I went to some orthos and pods and all were just amazed in how normal my foot apparently looks, and passed off my pain as me just overusing it. Physical Therapy has not done much for me, as my calf muscle has not grown since I was a kid. The strain from PT might help my ankle, but strain my knee or vice versa. etc

    I have noticed that my arch (or what little I had) has fallen and my foot now looks very flat and people say I look bow legged now! The pain is normally on the outside of my ankle. Anyone have some suggestions on some simple ways to relieve the pain? Preferably, no pain meds or braces!

    (sorry if I'm a bit scatter brained)

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  32. Kelsi, it may be that you will have to se about custom foot orthotics, and to wear shoes that truly support your feet and ankles. But there is no one fix that is a sure bet for every clubby. You need to find a doctor with substantial experience in the field of biomechanics of the foot and gait. Let me know where you live and I will endeavor to find such a person for you, if they can be found. You need to start thinking very differently about your feet, and it might mean you will have to travel some distance. Most doctors have little to any experience dealing with adult post-club feet. And join the Facebook group for adults/teens with clubfoot, where you will get lots of support.

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  33. Hi. I'm 53 years old, born with club feet, first casts at 11 days old, surgeries started as infant through 12 years old, many night casts until 12, saddle shoes, tap dancing and such.
    Had a wonderful doctor and I felt comfortable and fortunate as I was a teen. Athlete throughout high school, still very active most of my adult life. Last words I remember from my doc at 17years, when I was needing a doctors note saying it was "okay" to get into nursing school, to make sure I could withstand long hours of standing etc., were that I may experience later foot issues as an older adult. Well, 2 months ago, on a 50 degree, sunny January day, I did a power walk with a "secondary" pair of athletic shoes (primary pair, our pup got to and destroyed). Went 3 miles and felt pretty good until day 2. I could barely walk! Literally I was crawling around as we had no crutches only a walking stick which wasn't enough. Eventually pain subsided a bit, iced it, days later some heat. Kept aggrivating it at work(bakery, lots of walking to-fro, some standing on rubber mats but mostly on cement, rolling my foot over every other day by stepping off edge of mats!,6-8+hour shifts, part-time. Also I drive a standard and had noticed occasional clutch foot pain due to outward pronation(Irrated years ago too but didn't really pay much attention to). Didn't think too much of that until now. Then nights when ice didn't work, heat worse. Aspirin, Advil, etc, but not round the clock, helped. Tried to work in some exercise as it felt better but usually just reverted back to bain and barely able to walk. 2 months of this now. I needed answers and solution, too active to be hobbling around, too young, getting depressed. Just went to foot/ankle specialist for exam/xray today. My thought was a sprain, maybe a hairline fracture, pull...something that had a remedy/solution so I could get back to my norm. To my dismay, found out it was arthritis. Saw the arth in the xray, all between the bones on my left foot. The day of my dimise, power walk with poor footwear!! I kick myself now cause I know better. Doc said I most likely have arth in my right foot too but just isn't showing yet. Remedy per this specialist....pain should subside with Ibiprophen(800m/3x day)/aspirin, Alieve,etc for indefinite period of time. Need to bring down the swelling as to relieve pressure. 2nd option, cortizone shot but I won't do this unless pain doesn't subside. Otherwise he said I need to stay in footwear with good support, good shock absorb., stay on flat surfaces(in otherwords, no mowing the steep front lawn with the pushmower), minimal to no barefoot walking, drive an automatic, best form of cardio exercise for me is swimming or cycling but I can resume anyother form as long as I recognize my limits and resume once my foot simmers down. I know that probably one of the best remedies to get back to a painfree or as close as possible, is to ELIMINATE ALL MY POOR FOOTWEAR, ie no more flats, older, rolled-over shoes, high heels are OUT...PERIOD! I will live in 4-6 pairs of top quality brands, supportive shoes only from here on out. Brands that I am loving these days are Keens, Merrills, Sanita, some Tevas, El Natura Lista(THE BEST!!!)and more but can't think...I love clog types and some maryjanes. And ladies, there are some non-frumpy, very hip shoes out there. I can't wear any flipflops as my toe alignment has never been right for comfort, besides usually no support anyways. I have very wide feet too as most of us do plus high instep. For athletic types, I like Asics the best, widest toe box out there, so comfy. Others work to but I am patient to try on all types, gel soles seem to give me the best comfort and shock absorb. Please let me know if you have other good quality brands in everyday footwear or athletic types.













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  34. (cont'my last paragraph....In reading past posts, my club feet issues seem mild compared to many. I do feel fortunate that my case, as severe as it was at birth, has caused minimal issues until now. But none the less, a huge setback in my personal life and realization that constant awareness is vital from here on out. This will not beat me, I will take the best care of my feet from now on. My arthritis is here to stay but I WILL MANAGE IT AND STAY POSITIVE no matter what! :) Best to everyone and thanks for your sharing.


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  35. damn, nice to know i'm not alone. I'm waiting for medical cannabis in my state because the pain keeps me up at night and cannabis is the least harmful way to knock me out on a continual basis. pain is level 5 constant, level 7 while standing, and sometimes my right ankle has such immense pain i cant stand on it at all(sparatic). But keep on keeping on, i can handle the pain but not insomnia its giving me. its messing my knees up as well. most of the time i just fight the pain mentally, but sometimes it wins and i have to crawl around. 22, bi-lat. eric.

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  36. Thanks everyone. I would do anything to take the pain away. I love the 9mm comment i have also thought about crushing my leg and getting it amputated.. But i decided to wait another 20 years till they have really bad ass metal legs. I feel everyones pain. Stay strong i have put my leg through hell and i continue to, I wont stop until it drops me

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  37. Hello All,
    I'm Alex. 23. Born with bilateral clubfoot that was corrected with surgery, casts, and the shoes with the metal going up the leg (I don't remember all the details). I was fine when I was younger, but when I reached the age of 14 or 15, I started hiking. Pain was something I always had to deal with because I tried to keep up with everyone else and for the most part I was fine. It was after long periods of time standing or walking where I would get pain. I loved theme parks but would always wind up having to sit around and try to stretch my feet to alleviate pain. I still get pain and it makes working difficult. I work at a retail job with a company I love and i find myself taking a mix of OTC painkillers to make sure I'm not worrying about the pain. I usually wear skating sneakers because I know they're supposed to provide stability but I think I'm caving and realizing that they aren't the best shoe to stand in all day. Does anyone have any recommendations?

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  38. Alex, first off, where do you live? that is important because I try to link folks up with local resources wherever possible. As for shoes - if you can find a reasonable fit with ready-made shoes, I suggest going for something with a high top, like a hiking or work boot, laces are best, so you can get better support. You should definitely be fitted for custom foot orthotics, so you want to get those before you buy shoes, so you can be sure to get shoes that will fit both your feet, and the orthotics. But if ready-made shoes are a problem, you need to at least start thinking about custom-made shoes. And I strongly recommend rocker soles be added to the shoes, as this will reduce the amount of motion you need during gait, and will extend the useful life of your feet considerably.

    Let me know where you live, and I will try to direct you to some local resources. And are you aware of the Facebook group, adults/teens with club foot? Go to: https://www.facebook.com/groups/24892886820/?bookmark_t=group and request to join - you can meet hundreds of other clubbies all over the world, though the largest numbers are from the UK and the US. Glad you found the blog!!

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    Replies
    1. I live in rockland county NY, about 40 minutes from NYC. I did previously have orthotics made but at this point they are about 4-5 years old. I'm hoping to meet with a podiatrist this week who can look and see how everything is. The last time I saw a podiatrist, it felt rushed. All he did was take a quick casting and that was it. I'm trying to find a new podiatrist because I feel like it should be more than a 10 minute casting. Any recommendations for custom shoes? I am aware of the facebook group and was added just a few minutes ago, I am browsing it now! I am also glad I found the blog, I don't know anyone in my personal life with clubfoot but it's nice to connect with others out there.

      Delete
  39. i wos born in 1968 with 2 club feet . i get pain in my lower back hip and feet and just been told i have 1 leg longer then the uther i have 2 young kids and woud love to run and play with them but pain limets me .my kids and i go swimming it helps withe the pain a bit

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  40. Are you aware of the Facebook group for adults with post-club feet? Come over to https://www.facebook.com/groups/24892886820/?bookmark_t=group and join with hundreds of other clubbies like us. Lots of support, tips, humor, and people who really get it about being a clubby.

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  41. My 18 year old daughter was born with fairly severe bilateral club feet, and had two surgeries on each as a child (at age 1 and a ge 4). She has dealt with some pain over the past several years but has been able to continue to ride horses, which is her passion. Just recently her pain has gotten much more severe and now she is experiencing shooting pain up her lower leg and she has had to take breaks from the one sport she loves. Has anyone else experienced shooting pain up the leg (in addition to the regular ongoing foot pain)? We are now looking for a doctor in the Seattle-Lynnwood area so that we can try other things (like orthodics). Does anyone know of a fabulous doctor in our area who has successfully treated post-clubfoot surgery pain? Thanks much.

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  42. I am making some inquiries for you, so stay tuned. Can you be more precise as to your location? That might help. And how far are you willing to travel, as there are not so many docs with the right skills for post-club feet. Thanks! NBWK

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  43. Thanks for making inquiries. Much appreciated. We are willing to go to Seattle/Bellevue/Lynnwood/Edmonds/Kirkland, Anywhere near to the Seattle area.

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  44. I may have someone to refer you to in either Tacoma or Issaquah. Stay tuned! NBWK

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  45. Hi NBWK (Willy?),

    I've just read your entire page here (but not yet read your blog overall) and WOW, it's amazing to read of so many others with club feet. The reason I found your page, aside from having bilateral club feet myself, is I was in so much pain last night that I started to look for pain "solutions" online and found your page here. This is the first time I've ever looked for any info because I always just accepted this "condition" and didn't think there was any solution. But, being 45 yrs old, you never know if there have been advancements so I looked up a solution anyway.

    I'm going to request to join the FB group, so thanks for encouraging us clubbies to join. I see you mention you can help a lot of people find qualified doctors in their area but is it just US based? I'm actually American (from California) but live in England now (north west). Do you know of any doctors in England you could recommend, particularly north west as London etc. wouldn't be realistic? I guess I could ask in the FB group too, once I'm accepted in. Just thought I'd ask. :)

    I'd share my story too but it's similar to many folks above. I'm more interested in finding a better way to cope with the pain. The ONLY time I ever had no pain for 30 days was in my early 20s and I got a cortisone shot in each ankle. I realize that was only a temporary solution (and it obviously was) but man, a whole month with no pain? What a miracle :)

    Anyway, last night I could barely walk. This morning it's slightly better and by tomorrow I'll be able to walk fine....until the next time I do something as simple as walk for a short period. So, hopefully the FB group can help and I'll read your blog. Not sure if you can suggest anyone in the UK but if so, how can you get that info to me? I don't see anywhere that I can leave my email address. Please let me know and thanks for this blog!

    Cheers

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  46. Hi, Scott. First, there is an email contact near the top of the right column. Or, you can just come back here - I try to respond to every comment. Yes, join the FB group -you will find a very large contingent in the UK, so best to ask them for names of docs, etc., as I do the same. BTW, where did you live in California?

    As for your pain issues, there is a lot of stuff on the blog ere about various solutions, products, etc., that may be of help to you, so read on! And the great thing about here and the FB group is, we all truly get it about what you are going through, because we go through it every day. So welcome to both!

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  47. Hi Willy,

    Thanks for the reply and encouraging words! Just thought I'd reply back too :)

    I've joined and been accepted into the group but haven't really been in there other than literally 20 seconds earlier today lol. I don't really go on FB much if I'm honest but the group sounds great. I was telling my wife (who's English) that I've literally never met anyone with club feet, at least that I know of, so to find your blog and the FB group is pretty eye opening to say the least.

    I'm from Mtn View and if I read right, you're from (or live in) SF, yes? I grew up in the Bay Area but also lived in Nor Cal and Pasadena (for University, etc.). When I was about 12 (around 1980) I went to Shriner's hospital, was assessed, had a plastic leg splint(?) because my right heel is quite tight. So, it was something I was to wear at night kind of thing to stretch my achilles as I grew I suppose. I was told by the Drs at Shriners that come 18 yrs old I'd get surgery to "fix" my ankles and I remember thinking "that's only 6 years!" lol...of course, there was never going to be any surgery so I felt a bit let down. The ONLY time in my life where I had NO pain for more than a few days was when I got a cortisone shot in both ankles around age 20 and for 30 days, I was pain free and I couldn't believe how awesome that was!

    Anyway, I did have surgery on both ankles from around 6 months old, the last one being at 7 yrs old on my left foot which is the "worse" as far as the bone structure, scars, etc. But, I did play sports a lot as a kid and yes, I would have to lay off my feet after a good game of football (American) or basketball but, when you're a kid, you just get on with it. As an adult, I could go for a 1 hour walk and I'm in agony for at least 24 hours but, by day 2 I'm "almost" normal. Thing is, I've gained weight since living in England (about 60lbs!) and I'm sure that attributes to pressure, etc. Hoping to start losing that weight next week when I have some free time.

    Anyway, what amazes me by some of the posts here and my brief look in the FB group was that some folks have quite a bit of pain and/or limited movement that even seems worse than mine. I don't know. It's interesting because again, I've NEVER known any other "clubbies" and never really looked it up online til the other day when I found your site. I was literally just looking for some pain solutions (related to club feet) to see if there were any "medical advancements", etc. While I'm sure all of us have different levels of pain, it's nice to know folks like you who truly understand the pain. Some people say "maybe you just need to walk/run more to build up tendon strength" or whatever and I usually just say "yeah, maybe" because I feel it's too difficult to explain that my feet just aren't normal.

    Anyway, will definitely check out the FB group and try to connect with some Brits to see if they recommend any physios or specialists in biomechanics as you suggested. I found one in Manchester (about an hour drive from where I live) and may give them a ring about custom shoe inserts(?). I can say, the shoes I have now are terrible, running shoes mainly. I used to always buy basketball "high tops" because I felt they protected my ankles a little more. Basketball isn't popular here in the UK lol so it's hard to find such shoes but I can order them online. Maybe those types of shoes with some biomechanically made inserts would help??

    Sorry to ramble. Love the blog and thanks again for referring us clubbies to the FB group. Suddenly I don't feel so "alone" in this world of pain I live with. Pretty eye opening to say the least!

    Cheers for everything buddy! Hope to see you in the group :)

    Scott

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  48. Scott, nice response. Mt. View, eh? We should try to connect sometime - you are the only other clubbie I have found directly in the Bay Area so far, though there used to be another guy who moved to Texas - no accounting for taste, as they say.

    As for shoes - I'd like to suggest you make contact with Arnie Davis at Davis Comfort Shoes in SF - I used to work for him (I can no longer make shoes and orthotics due to hand problems) and I can assure you it is the best place in the country for therapeutic shoes and foot/gait solutions. And I still work with him on certain types of consultations, especially post-club feet.

    If you would like to connect, email me directly at notumbo@gmail.com and I will give you my other contact info.

    As for the comments people make about "strengthening your tendons," - nobody can strengthen their tendons, because tendons are just what they are. Muscles can be strengthened, but not so for us clubbies - turns out our lower leg muscles are small for a reason completely unrelated to exercise - the muscle cells themselves are distorted, and are not able to build up as with normal muscle cells. There are posts on this blog that go into this in more detail.

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  49. Hi Willy,

    Thanks for your email address. I just sent you an email, coming from my hotmail.com account. Thanks as well for mentioning Davis Comfort Shoes. I assume I'd need to go there in person, yes? Anyway, I asked about that in the email I sent you. Don't want to take up too much space here lol.

    Please feel free to reply to my email and thanks again for the info, this blog, etc. Will have a good read here on this blog asap!

    Thanks again!

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  50. Hi everyone,

    After reading all these posts it really brings assurance that I'm truly not alone in this battle. I'm a mother of three very active boys and being born with clubfoot has really impacted my life more now than ever. I live in California and just recently visited an orthopedic surgeon due to a new consistent pain that would not go way with pain meds. I'm 35 last surgery was before I turned 5 the doctor was surprised to see an adult with clubfoot problems and found out that I have subtalar arthritis and literly told me you have a disability which was my fear. I have done everything they told my parents I was not going to do from walking to wearing flip flops in sunny California to walking on the beach! I have never let clubfoot let me down but to hear at 35 that you have arthritis and are labeled disabled it was a big awakening! I still have severe pain on and off I was playing co Ed softball not anymore I was working out that went out the window as well I just got fitted for inserts I'm scared to even think they will be as painful as the ones I had as a child. I'm glad I found this forum it makes me at ease at there's hope for us out there I just wish more medically out there for us.

    Vanessa

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  51. Hello, Vanessa! Glad you found the blog, and you should also join the adult CF group on Facebook, at https://www.facebook.com/groups/24892886820/?bookmark_t=group And may I ask where you live in California? I am in San Francisco. As for any surgery you are looking in to - since your doc already told you he was "surprised" to see an adult suffering with CF issues, that is usually a sign you need to look around some more, to try and find a surgeon or biomechanically-oriented doctor for second, even third opinions. Never have surgery by someone who hasn't encountered your issue before - it is not likely to have a good outcome. And please read more of the material on this blog - there is quite a lot, and as a 60-y/o clubbie myself, I have lots of experience on these issues. Hope to see you on the Facebook group - just ask Werner to join, and he'll make it happen!!

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  52. Hi there!

    Thank you for the response! It may be a bit of a shocker but I actually don't have a Facebook I know I live under a rock :-) but with two very active toddlers it's hard to have a social media life. I actually live in Orange County CA. And thank you for the suggestions on a biomechanically trained doctor I told my husband and we will look for one here close to home. And yes surgery is my last resort even the orthopedic surgeon who was a pediatric surgeon and corrected clubfoot advised me against it.I have always dealt with clubfoot on my own I've never let it consume me. But recently with this subtalar arthritis diagnosis it has opened my eyes. I'm now accepting the fact that I have a disability and I need special footwear that my days of cute heels and wedges are over. I dread the trips to Disneyland due to the next day consequences. I've read so many posts on here and we all can relate. I wanted to ask you about inserts I just got fitted for some two days ago but I'm a bit concerned about the outcome. This place sees kids with clubfoot not really adults and now I'm getting worried that they might not help :-( Thank you for this forum Vanessa

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  53. Vanessa, let me talk to a couple of docs I know who may have someone competent to refer you to in OC.

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  54. Hello! I was born with club foot in both feet and my parents told me it was one of the worse cases the doctor had seen, this was in 1988, and there was a great chance I wouldn't be able to walk. I am now 25 years old and am already experiencing a lot of discomfort and pain. I have always been active and have always gotten swollen ankles from various sports or just standing too long. I'd say it hurts the worst if I'm kneeling; when I go to stand up I have this stiffing pain in my whole foot and you can hear it crack, as if I am not in early adulthood. Also, again, standing for too long causes a lot of pain and I need to sit. Luckily my boyfriend is able to rub my feet so I can relax. I also get really awful restless legs when I try to sleep, is this common? I feel as though things are not looking good for my future if I am already experiencing this discomfort...

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  55. Rebecca, are you familiar with the adult/teems with club foot group on Facebook? You should definitely join it. Go yo https://www.facebook.com/groups/24892886820/?bookmark_t=group and ask Werner to sign you up, 600+ clubbies from all over the world. Great support, and people are full of good information. Plus, this blog has a lot of info - spend time exploring! Glad you found us!!

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  56. Hello, I am now 24 and I was born with bilateral club foot with casting as soon as I could pull up to a standing position and then multiple corrective surgeries for the club foot. My left being much worse than my right I currently battle with moderate to severe pain in the left daily. I am a nurse and I work 12 hour shifts so needless to say I never take anything for the pain, sometimes motrin with honestly no releif...have tried orthotics custom made from Shriner's back before I turned 21 and couldn't be seen there anymore. Not sure that the ever really helped. I would love to start going to the gym more (used to be a three season athlete in high school and just dealt with the pain). Now all I can do is swim for cardio because of the pain prior or definitely after a work out on the elliptical. There are days that I wake up and the ankle is so stiff I cannot walk on it right away.

    So I have basically accepted there isn't much to be done about it, which is hard to swallow at only 24 years old. But I am looking for any suggestions on a Doc you could recommend in the Chicago area, as I have not seen anyone since I "graduated" from Shriner's when I turned 21.

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  57. Kayla, I will see what I can find for you in Chi-town. BTW, are you aware of the adults/teens with clubfoot FB group? Drop over to https://www.facebook.com/groups/24892886820/?bookmark_t=group and join. You will meet more than 600 other clubbies from all over the world, get lots of support, ideas, and bad jokes. Do drop in! And keep reading all over this blog - there is a lot of helpful stuff here! Glad you found us!

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  58. A possible solution for the pain of arthritic changes in adult club feet...When I got into my 40's my pain level increased substantially. I used custom orthodics and for a few years they helped. The pain was so bad that by the end of my day at work (in an office mind you) I felt like I was going to throw up.
    Then I found a chiropractor who adjusted my foot by having me lay on my back and he held my foot at the toes and pulled upward. *It hurt more for the first 24 hours. But then, After only two adjustments my pain went from a level 10 to about a 2. My ability to walk has greatly improved. I get through my day without much pain at all provided I wear my sneakers and Dr. Schools inserts. I have also found great success with Clarks "Wave" brand shoes. My life is so much better. My primary doctor said that the chiropractor probably broke up years of adhesions. To try this you need to find a chiropractor that you trust and one who is comfortable adjusting the foot. The next day is very painful, but it passes quickly and there was no pain while sitting even the next day just while walking. Good luck. God bless!

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  59. I have to tell you I'm a little stunned after reading through these posts. I'm 53, was born with bilateral club feet and up until the past few weeks, it didn't occur to me that that might be the source of the pain I've been experiencing. I don't have time for much at this point but I did want to let you know of something to try for pain. My endocrinologist is a bit of an "outside the box" thinker. He was a researcher at Duke for years and finally decided that most of the medical community was more interested in making money and sleeping with drug companies than they were with doing what benefitted their patients, so he retired and sees only the patients he wants to see now. I won't go into all the details right now but magnesium shots really help with my ankle and foot pain. They also help with the hip pain associated with compensating for the foot pain. Basically it's a muscle relaxant but it seems to ease the swelling and ache for me as well. I'm sure it won't work for everyone but it may help someone. I'll check out the facebook page as well.

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  60. Well, nice to hear your input, but no need to be invisible, because we clubbies have had enough of being invisible, and here, you are among friends! I would like more info on this idea, and maybe even have your doctor get in touch with more on this - it would be most welcome by thousands of other clubbies, believe me! Come back and read more, there's a lot here, as well as on the Facebook group. Hope to see you there - Willy Kiyotte

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  61. Hello,

    I'm a 26 year old woman who was born with one left club foot. I was casted as a baby, had the boots and bar and eventually had surgery on my foot. the doctor who did my original surgery screwed up. He put bones back in the wrong place or something like that (I'm not sure exactly HOW he screwed up, just that he did and made my foot even worse than it had been originally) so my parents took me to another doctor. Dr. Fraser. and he has been just wonderful, he took one look at my foot and what the other doctor did to it and scheduled me for emergency surgery. It's thanks to him that I am capable of walking and I am so grateful for that fact every day of my life.

    ReplyDelete
  62. Added to previous post (wouldnt allow me to post the whole thing) --- But sometimes I still get a little down because of the pain. He did the best he could but my foot was not completely healed and i've had severe arthritis in it since I was about 10 years old and it's only been getting worse. Having been on pain killers my whole life I am now immune to the vast majority of them and unless your pumping morphine into my ankle, basically nothing works. The doctors are talking about completely and permanently immobilizing my ankle in order to stop the pain. The weather makes it worse but most days it feels like the pain is shooting up through the bone itself, right up my calf almost half way to my knee, my bone aches and throbs. It honestly feels like it's cracking or something. I know this isn't supposed to be a common thing for club foot to have if it's fixed properly the majority of them live completely pain free lives. But my son has bilateral club feet too... Even worse than mine were and mine were the worst case Dr. Fraser had ever seen, he even used me as a case study when he taught classes at the University. Thankfully he is still around and is helping my son because I don't think I'd trust anyone else with him. Unfortunately he is getting very close to having to have teh surgery too because he fights his casts and his feet just want to keep turning back in. he's 14 months old and JUST learned to crawl about 2 weeks ago. I'm terrified he's going to end up in as much pain as I am in. I can't do any job that requires me to stand for longer than 20-30 minutes maximum. i basically have no choice but to have a desk job and I live in a very small, rural community in Saskatchewan so jobs like that are few and far between. Some days I want to take a hacksaw and chop my ankle off. Nothing helps. I've tried everything. I have a slipped disc in my back because of my ankle, my left leg is an inch shorter than my right and my feet are 1 & 1/2 sizes different for shoes. Right is a size 9 left is a 7.5 so good luck finding shoes and I sure as heck can't afford custom shoes, especially with my son having the same issue (it's over 200km away to take him to his Dr. so the trips once a week can get very expensive) and i'm almost at the end of my rope and don't know what to do. Orthotics make my back feel better but my ankle hurt more. pain killers don't work. Massage doesnt work. I just want the pain to stop. And the worst part is... I'm really good at putting on a brave face and toughing out the pain since i've had to do it my whole life so no one truely understands exactly how much it hurts. I try explaining it but they don't get it. If this were sudden onset pain and stuff I hadnt been feeling my whole life.. the pain is so bad i'd be taking myself to the ER! But no one understands. No one realizes how much pain i'm in and how badly it affects my daily life. I hate not being able to run after my son without suffering the consequences an hour later and of course my lack of being able to be active has led me to become.. shall we say... heavy? I'm a large girl. That runs in my family as it is but the not being able to be active thing has definitely added on to it. I was recently denied for a gastric bypass surgery because my BMI is too high. If it wasnt that high I wouldnt need the surgery. I cant lose the weight without the surgery, and the pain will never reduce if I don't lose the weight. Its a vicious cycle and I'm completely lost and hopeless.

    ReplyDelete
  63. Well, first, what's your name, and where do you live? And let me alert you to the adult/teens with clubfoot Facebook group, where you can meet hundreds of other clubbies with the same issues who actually "get it" and where you can get support, feel free to rant, and make new friends. Go to https://www.facebook.com/groups/24892886820/?bookmark_t=group and ask Werner - he's the founder of the group) to join, which he won't hesitate to do for you. Like I said - lots of very wonderful clubbies, and the occasional bad pun! :-D

    I get how hard it is to lose the weight - have the same issue myself. I struggle with the calories, exercise, etc. As for the ankles - has anyone suggested adding rocker soles to your shoes? They greatly reduce ankle motion in your feet but provide the proper motion for better gait. Please look elsewhere on this blog for much more info on rocker soles. I really wouldn't be walking today without them.

    As for hope, you have come to the right place - here and the FB group. You are no longer alone.

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  64. Good to read these posts. I was born with severe bilateral club feet and had corrective surgery at 3mth of age. Pretty much took a while longer than your average kid to meet gross motor milestones. Although by teenage years played many sports and school rep teams. Feet great until I turned 35 and then pain became excruciating. Originally went to an orthopaedic surgeon who tole me I was too young for an operation and had to loose weight and exercise more. I am about average build, had just given birth to my third child and found it hard to exercise due to the pain. So I gave up and put up with the pain and relied on ankle guards for daily support. Earlier this year (aged 40) I decided to get a second opinion- best thing I ever did. Found a very knowledgeable orthopaedic surgeon. Since then have had a cortisone injection via imagining into the subtalar joint. Best pain relieve ever. Doctor also said I could have a fusion of the ankle any time I wanted and guaranteed 99% success rate. Putting the op off for a few more years and will rely on the cortisone injections. Just had my second (first one lasted about 6 mths). The moral of my story is if you don't like what a doctor says don't hesitate to get another opinion.

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  65. Hi I am 22 year old female. I had bilateral clubfoot when i was born. they tried to treat it by using casts, shoes etc. but as it turned out it was the joints and bones of the feet as well as the tendons and that. I had surgery on my feet when i was 3 years old and the bones were broken and repinned straight and spent a further 12months in plaster cast and learning to walk. I must admit they did a fantastic job and my feet where pretty straight. Ive always had general aches and pains in my feet and ankles and swelling. I also get muscle spasms and cramping as well and tendon tightening. But for the past 12 months i have had a lot of pain in my left hip and lower back and my left foot has started to turn in again slightly. It has now got to the point where i have been off work for the past 3weeks as the pain was getting unbearable. I have been today to see a orthopedic specialist today and they were examining the hip and the joint. But as it turns out the bones are perfect he is now concerned that it a knock on affect of the clubfoot and i have now been referred to another specialist to look into the tendons and soft tissues of my hip,pelvis and feet and to see where we go from here. He wants me to continue working but this isnt going to be possible with my current job. If i applied for another job somewhere they arent going to want someone that cant walk very far and bend or run are. Do i tell them i have a disability or just pretend like its nothing. Mind you they will tell cause i dont exactly walk properly anymore.

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  66. I'm a 38 year old woman, and I was born with a left club foot. It was mostly corrected as a child using cast, bracing and special shoes pretty successfully and thankfully never needed surgery. However I have always had ankle pain because I have a terrible flat foot, and a short Achilles tendon. The pain has been progressively getting worst. Sometimes I can hardly walk. I've been doing some research came upon something call the Hyprocure implant. I was curious if anyone with a "corrected" club foot had done to correct the overpronation.

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  67. Implants work best when the cartilage is mostly intact. If there is a significant degradation of cartilage, and if the underlying bone is brittle, the outcomes are less certain. That is all I know about them, so do more research before having it done. I would ask at least four doctors to get the variety of perspectives.

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  68. A previous post talked about a referral for someone who knows about adult club feet in Seattle area...did anyone find a name?? If not do you recommend a podiatrist, orthopedic or???? I'm 53 and have not seen a doctor for my club feet since I was a minor but having more pain lately and thinking of trying orthodics or???? Any suggestions would be welcome!

    PS I have been having rolfing done on my feet for several years and though extremely painful has also been extremely helpful with increased flexibility and movement in my feet plus my calves have a bit more shape.

    ReplyDelete
    Replies
    1. You should contact Northwest Podiatry Lab and ask them for a referral to their better biomechanically-trained clients. You can't get anything directly from them, only through a doctor, but they know who the better clinicians are. Contact 1091 Fir Ave Blaine, WA 98230
      (360) 332-8411 and explain that you are seeking a very good biomechanically-trained clinician to work with - they will give you at least a few names in your area. Tell them Notty sent you.

      Delete
  69. Does anyone know how to ease the pain when you have club foot on both feet when you have been walking and standing etc for so long, the next day you can't get up, walk etc cos its so sore.

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    Replies
    1. I've found ibuprofen, soaking and massaging my feet the night before can be helpful...unfortunately no magic answer.

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  70. I am from the Caribbean and have a beautiful 18 yrs old daughter with club feet. I didn't know this site existed and will be directing her to it. Her right foot is a little smaller than her left and I was searching to see if there were places in New York that I could purchase shoes suitable for her.

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  71. If your need is only for different-sized shoes, there are places closer than New York - unless that is where she lives right now, of course. Nordstroms is the best place for different sized shoes over-all, but not if she needs athletic or more supportive shoes. Does she also live in the Caribbean? I may be able to find some other resources, and of course, there are several web sites that sell different sized shoes, as well - see the Resources area to the right of the page for links. Glad you found us!

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  72. I am a 50 year old male with both feet clubbies. I was casted at birth for several months, then into braces and finally at age 9 achilles tendons cut and repositioned. I have had pain all of my life. Sometimes worse than others especially when playing any sports. I am as active as possible, biking, lifting weights etc. No running as it is impossible. I was told when I was 22 that I needed my bones in my feet fused. I refused to do this and am very thankful due to lack of mobility. The pain is becoming increasingly worse and i am trying to locate a great ortho doctor in the Columbus OH. area if anyone would be willing to share.

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    Replies
    1. What's your name? I will see what I can do about finding a qualified biomechanically-trained practitioner in your area. And I don't know if you are aware of it or not, but there is a great group on Facebook for us clubbies, at https://www.facebook.com/groups/24892886820/?bookmark_t=group called adults/teens with club foot, with more than 680 members so far, and I am sure there are a few in Ohio. Glad you found this blog! There's a lot to read here, so I hope you come back often!

      Delete
  73. Hello,

    I'm 28 1/2 amd have a club foot (left). Surgery right after birth and the shoes and so forth. I've had pain most of my life especially with winter or rain. But recently it'd say last couple years, the pain is getting increasingly worse everyday. It will start in my foot and go to my knee, my whole bottom part of my leg just is in pain and nothing eases it. I also put most of my weight on my right side, that being said my hip on the right side has been hurting a lot lately. I work in a pharmacy so I stand a lot, I don't know what to do....any help. :) thank you

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  74. Hello,
    There's nothing left for me to say, everyone has said it!
    Surgeries, boots w/bars, physical therapy & constant pain or discomfort. I'm a 42 years old woman living in Ca. I'm a restaurant G.M. I work 45 hours a week. Obviously, I'm on my feet for most of them, & during the rushes, walking FAST all over the place. I'm in pain. My foot (right) aches and sometimes gets a stabbing pain. If I walk with long strides for any length of time, my calf aches. My feet have at least a 3 size difference. My calf is much smaller. My right hip has begun to hurt at times and gets a weird painful twinge that takes my breath away and almost makes my leg buckle. I'm not sure, but it seems as though it's related to my foot. I've never been told if one leg is shorter than the other. I honestly have had this addressed once as an adult and the doctor (who I went to because he was a cool old HIGHLY recommended orthopedic surgeon/hippy with a Jerry Garcia tie, so I had hope he'd have 'alternative' solutions), told me to do stretches, keep it wrapped and offered to write me a prescription for a "strong painkiller". Needless to say, I deemed it hopeless,left and just gave up. Like one of the above posters, I just accepted it and dealt. haven't found any local resources. I want to be able to walk when I'm 60. I don't know what to do. I love my job & could never sit in an office.However, it does require me to wear certain shoes that are non-slip, black, etc, etc. Also, an obvious side effect of my employment choice is lack of health insurance. Any help or advice you can offer would be greatly appreciated

    ReplyDelete
    Replies
    1. By CA am I right in assuming you live in California? If so, where? I may be able to offer some solutions. Please respond!

      Delete
    2. Having club-foot/feet and doing a job standing on your feet all day is as sensible as a blind person working as a crossing guard (lollipop lady/man in the UK) you are asking for trouble. Also IMO anyone with a foot size deviation of more than half an inch will most certainly have some sort of size deviation between the left and right leg. Try and get a job that you enjoy off your feet, go back to college if you have to (I did). Painkillers don’t work and the more you take the more depended on them you become and the more pain you will suffer in between doses. Tricyclic medicines (TCAs) have really helped with my pain relief and the only adverse side effect I have experienced to date is a good night sleep. I think the most important thing is to be nice to your feet and they will be nice to you back!

      Delete
  75. My cousin, who is now 55, had his club feet surgically "fixed" in the late 1950s as an infant. I don't know the details. but he is now in constant pain and says "it's because the bones of my feet are all messed up". He is a teacher and is on his feet all day long. in agony. Can anyone recommend a good doctor to go to in the New York City area? He is totally against taking any kind of drugs. Sorry I am so ignorant, but is a podiatrist or an orthopedic doctor best to go to?

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    Replies
    1. Where is he in New York?

      Delete
    2. Manhattan, but can travel to any of the 5 bouroughs.

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    3. There are a number of good podiatrists in NYC who have a good background in biomechanics. I don't know if Sheldon Langer is still in practice, but if you contact the Langer Biomechanics Lab - go to their Practitioner Locator at http://www.langerbiomechanics.com/PatientSite/Locator.aspx and enter your info. They will send you some suggestions for practitioners who work with them. Another possible resource is JR ORTHOTICS 929 Park Ave, New York, N.Y. 10028,
      (212) 861-7170. The trick is to ask them which of their doctor clients does the best job with both casting and biomechanical evaluation - that is the type of person you want to see. Best to go for non-surgical care first, in my opinion!

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  76. Thank you so much! I will pass this information on to my cousin. Thank you!

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  77. I don't know if this is the right site to use but im a parent of an 18 month old who has club feet and i feel he is in alot of pain due to his feet / legs he has not been treated due to the NHS saying he will grow out of it .im currently fighting this as he has trouble walking can any1 recommend something i could try in the mean time.

    thank you for reading .

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    Replies
    1. I am sorry that I cannot help you in this instance - this site has no connection with the NHS, nor am I in the UK, so cannot even suggest work-arounds. But if I were you, I'd be raising holy hell and kicking in doors, none of that stiff upper lip stuff, because as your child gets older, the treatments get more iffy and difficult. So time to raise some hell - contact - or better yet, go park yourself in the offices of your MP, and refuse to leave until they pry open the doors for you.

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    2. This comment has been removed by the author.

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  78. Hi all Michael here.

    I am now 26 and was born with acute bilateral club feet(both). I had the bar shoes on my first 12 months them had the major reconstructive op at 1, another at 3 then another at 11,13 and 15 years old. I had the triple fusion done at 15 and it didn't help me at all i was in more pain for the first 3 years then i had before the op and i now have similar pain to when i was a kid... The other foot had a different op which involved a bone raft from my hip and fusing 1 part both feet are acute but one looks more deformed i guess. I have dealt with extreme pain my entire life... I remember going to the zoo etc as a kid and i couldn't walk for 3 days afterwards. It has affected my education as i was in a wheelchair for 6 months each time with the ops as a 11-15 year old... i ended up leaving school in year 10 as i was unable to walk and was sick of feeling like a misfit. I pretty much became a hermit and sat in my room on the computer wasting my life away playing games as that was the only way of not being in pain. I have been on the disability pension since age 16 and found ways of making money on the net but i do want to get out there and live a normal life. When i was 22 i weighed about 365 pounds and was not happy with myself and thought maybe if i lost some weight it would help me get out in the world and even help my feet.. I got motivated and and lost 100 pounds in 6 months and yes it did help my feet a little i prob went from walking 500 meters 5 min standing pain free to maybe 1 km or 10-20 minutes standing. The fact im 6 ft 6 with a very large bone structure does not help as i wish i could get a lot lighter, its the only thing that has helped me. Pain meds are almost useless. I also dont like being drugged up i pretty much have to take Endone and Oxycontin to even get any sort of moderate pain relief but by that stage you are just drugged out of your mind and useless anyway. I also managed to find myself a girlfriend who im buying a house with atm after losing the weight which has definitely improved my life. I tried getting a job.... but as i have no skills i ended up just getting my security license and being a security guard... I dealt with the pain through my small shifts and only worked 14 hours a week. 3 weeks after starting i bloody dislocated my knee cap and tore my ligaments in my knee at work and had to have a knee reconstruction. I am now sitting here in chronic pain with a shit knee and two shit feet after going to the damn supermarket. I just wish there was something to get rid of the pain. It has ruined my life i have not been able to play sports even though i know i would've been good at them. I have not been able to become a trades person or any sort of job that isn't in an office on a damn phone. I feel like i cant really contribute to society as a functioning human being and it drives me nuts. My girlfriend is the complete opposite and has a good job as a medical scientist loves going on hikes etc but she deals with me not being able to do the things she likes to do. I just want to be able to have a day pain free once in a while when i REALLY need it. Does anyone know of anything...

    Here if a few things that helped me a little.

    Hiking shoes; Good ankle support find a pair that are light and comfy
    Shoe inserts; Go to a good podiatrist get a pair made for those hiking shoes. Give them a chance to wear in.
    Losing Weight; Get to your body types best weight... Even being a little skinny would be good the lighter you are the lower the load. It helps.

    ReplyDelete
    Replies
    1. Michael, glad you found the blog. You should also know about the Facebook group - adults/teens with club foot, at https://www.facebook.com/groups/24892886820/?bookmark_t=group Just ask Werner to join you to the group. Your solutions thus far are pretty good (I know it doesn't seem that way, but you are doing more than most do) but you might consider adding AFOs to the mix instead of just foot orthotics, being that you are a larger dude. They would give you far more support. Look into something called an Arizona AFO.

      Also, read more of this blog - there are a lot of solutions, that work better or less for different people. And there is a lot of other info, that can help you better understand post-club foot syndrome.

      Hope to see you on the FB group!

      NBWK

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    2. Yeah being around 6 ft 6 and having the width of a damn rugby player certain did not help me! I wore AFO's up to my knees after my fusion surgeries, to hold the bones in place more while i walked. They honestly didn't help me very much in terms of pain. They made it almost impossible to wear shoes they made me a misfit at school and also ended up very sweaty and gross.I also joined the Facebook group shorty after reading a few of these posts. Thanks for your input. I just want some sort of wonder drug i guess, that probably doesn't exist! All i want is a day pain free to do whatever i like every now and then. I will look into more AFO's i guess, maybe they have advanced a bit in the last 10-15 years.

      Delete
  79. I'm glad I found this site! I'm 28 years old, and born with my right foot clubbed. My family didn't have a lot of money, so I had the initial surgery/brace to help correct and growing issues, but I could never go in for a second surgery, so I've just delt with it. I used to work retail, and then manufacturing, so my feet were constantly sore, especially the 6 months I worked two physically demanding jobs , about 70 hours a week total. Now, I'm in an office environment , so I don't have to be on it as often, thankfully.

    I do have one problem though that may send me to the doctors soon; A couple years ago, I noticed internal bruising around the bottom of the scar where I had the initial incision to reconstruct my foot, but nothing serious. Now, the bruising is still there (albeit it hasn't darkened or gotten worse), but I've begun having some pain around the area, as well as in the achilles area, and even sometimes further up. Is it possible that these new pains are normal for a clubbed foot? Or something to investigate further?

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    Replies
    1. Yes, quite normal, sad to say. But that doesn't mean you shouldn't try to find solutions. There is a lot on this site to look at that can offer many options. Also, you should join the Facebook group at https://www.facebook.com/groups/24892886820/?bookmark_t=group and find many other clubbies to talk to. You will make many new friends, as well. Where do you live, BTW? I may be able to direct you to some solutions nearby.

      Delete
    2. I appreciate your response! I have a doctors visit set up for next week to have it checked out. I'm a bit frightened it could be the onset of dvt in that leg, but I'm sure I'm being unreasonable.

      I'll also check out the group! Thanks so much.

      Delete
    3. Wow ! I had no idea so many ppl had club feet. I am 31 have had 6 surgerys from 6 months to 13 yrs old. I also have daily pains in my feet, knees , and hips. I am now starting to experience lower back pain. Nothing seems to work I just deal with the pain. It was nice though to see I'm not alone.

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  80. I was born with severe bilateral club feet which required surgery as an infant to correct. I'm now 21 an unable to work because of the pain. I haven't been able to go to the doctor because I cannot afford insurance. My ankle's are so bad they've caused drastic weight gain, severe depression and suicide attempts. I've lost quite a bit of weight, however I'm still over 250 lbs. I can't go to college because of all of the problems my feet and ankles have caused and There is no way I can afford it. My feet and ankles have ruined my life.

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  81. Hello! Happy to have found this site. My son is 12. He is super active playing intense basketball five days a week. He had severe bilateral club feet as an infant. Did Ponsetti. His feet aren't perfect. He walks on the outside edge of one etc. Anyway, as you can imagine, all his work outs hurt his feet. He comes home and a good soak helps. But I am wondering. Given he is young, what more can we do? Does physical therapy to help loosen tendons help? Should I look into orthotic shoes for him? Is there anything to do to help improve his feet?

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    1. I too walked on the outside of one of my foot. I had a tendon pull and a staple to fuse my foot at the age of 10. I am now 31 and still walk normal.

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  82. Hey I'm Marie I been dealing with my club feet for 25 years I'm now homeless because of my club feet I can not keep a job because if I stand on my feet for 8 hours I will not be able to walk sometimes the pain just come on it's own sometimes it's from the shoes I wear I have know money to go see a doc

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  83. Hello, I'm glad I found this website! I am 22 from El Paso, Tx. I was born with with clubbed feet (right and left) and received the corrective surgery on both feet at about 9 months. Fortunately I only went through one surgery. In high school I was in many sports. Pain would come but usually not till after a couple of hours of static behavior. I could usually walk off the stiffness. However my level of pain in present time is increasing. I am a food server and during my shift I can feel my feet/ankles getting sore hours into my shift, but its tolerable. When I get home is when the pain is very intense. After sitting down for a good 15 mins or even waking up the next morning of a night shift I can't walk. I literally would prefer crawling to the kitchen or living room. What is strange is after trying to force myself to walk its as if my feet warm up and the pain subsides, at least until I sit or lay down again. If I don't work for a a couple of days straight, my feet eventually return to normal as If nothing is wrong. However I dread knowing when I have to work. I literally look like an 80 year old man limping around trying to get my feet to "warm up"

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  85. Hello, I wish I had found this community years ago...what an incredible resource for all of us, there is very little information out there for adults with club feet. I am 38 and was born with bilateral club feet. I had approx 10 surgeries on each foot, the last ones at 17. Up until the past few years, my physical activity was relatively normal - I could do most things, I experienced some minor daily pain, and I only ever had to take pain medication if I really over did it - like a day of hiking on hills (for me up and down hills is harder on my feet than running). I have always had very limited ankle movement, I can't wiggle my toes except for three of them. I am very lucky that both my feet are the same size - kids size 1.

    However, at this point, I have realized that I need to seek help from an orth or ped or someone. I am hoping someone on this board might point me to a great one! Most days now I am literally counting down the hours until I know I can put my feet up, I am rarely able to walk without a limp, I am limiting my daily activities to accommodate the pain, and it is taking my feet almost an hour to "wake up" in the morning (I have always used that term in my own head, does anyone else?) My general practitioner referred me to a specialist who I swear to god had never seen a club foot before. He gave me some prescription meds, told me to get insoles (from the grocery store!) and to come back in 6 months.

    I had braces as a child until about age 12, and I would even consider wearing them or some other orthotics again. Does anyone know of a doctor in the boston or new york area that you would recommend? I live on cape cod, south of boston. I have a sister in New York and would gladly travel for the right doctor. I feel like the increasing pain just kind of snuck up on me over the past few years - probably because I was in denial - but I am confident there is help out there and I will find it!

    Thank you for your help.

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  86. Wearing good running shoes 99% of the time has been my lifesaver. Even at the cottage and down at the dock I'll have my runners nearby. I had three operations on my right clubfoot at Sick Kids in Toronto, ON Canada. My ankle will hurt sometimes if I sit on a stool that you have to hook your ankle around or walk on hard concrete flooring in box stores or rocks or if I sit in a position too long...today I moved some furniture and and heavy boxes and so now my ankle is aching with the odd very sharp pain. Sometimes I slipp on a tensor sock for an hour or so, the extra support seems to reduce the discomfort whether in bed or still walking around. Getting ready for a trip and doing laundry and packing aften leaves me with a very sore foot too, so now I go easy. Taking time out for the gym really helps, an extra 10-15lbs over weight will cause my ankle to hurt a little more than usual too. Practicing my posture and walking more slowly help. I was told by one of the best ortho surgeons in the world to expect to walk with a can eventually and to get a desk job. When my ankle really starts to hurt, like tonight, I get nervous and think maybe this is it. I have very limited heel to toe motion in it and it's 1.5-2 sizes smaller than my left. As a kid I was so self-conscious of it, but much less so now. The calf muscle is quite small too, probably half the size of my left. Well, good luck out there folks. We're all part of the 'Club Club'. Chins up. -SRoss

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    1. Opps a few more things to add to the above. I recently bought a cushion mat for in front of the kitchen sink at home -it really helps. The floors at home are laminate but I still wear runners pretty much all of the time at home too. About four years ago I went to try some physio on my ankle and ended up doing acupuncture for the first time in my life. Incredible! It was as though a cast of pain and stiffness had been removed. I had better heal to toe motion and no pain. Apparently I took well to the treatment and went a total of three times. Back then I was at least 20lbs over weight, ceramic floor in kitchen at apt I was renting and lots of very oddly hard wooden stairs, along with a very crappy stool at work I sat on sometimes. My right hip and near end of my tailbone have been feeling a little different the last few years too..aggravated by 'over doing it'. Well no cane yet knock on wood. Best wishes.

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  87. Rose.

    I'm 34 and have only my right foot club. Casts until 8 months or so. One surgery not quite sure when, to lengthen my tendon. Jokes in the family about how great I am about untying knots thanks to not liking the braced shoes. No issues as a child, but I can remember Grandpa walking with me with his feet pointed out so I would walk that way too. In high school I used to get bruising around my left knee due to how I walked. Issues with finding shoes that are comfortable. Right foot is at least a size smaller than my left. The older I have gotten, the more sedentary my lifestyle, the more trouble I have with pain. It's normal for it to take about 10 minutes of rotation and walking in the morning before my ankle loosens up and stops hurting. If I "over do it" (say a hike of about 5 miles, or anything with hills) my ankle will have a dull deep pain and be so stiff I can barely use it for at least a day. I have also found that the more stress I am under the more it hurts. I've always associated this with the fact that it's natural state is to turn in, and I usually focus on my walk to ensure that I am placing it correctly, but the more tired, or stressed I am the less attention I pay to it. My right calf is about 2/3rds the size of my left. Very few people ever notice my limp, then just assume that it is my walk ( at this point I guess it is, pronounced enough that even grandma jokes about how I swing my booty!). Just after Hurricane Katrina I was living in New Orleans and had about a week where I did not think I would ever walk again. Lots of alcohol and not getting out of bed "solved" that one. I've not had an episode that bad since. I'm currently a bit overweight and have been pushing my exercise habits to address this. Not surprisingly my ankle has been hurting quite a bit lately. For now it is bearable with just stiffness that will work out, and at worst a constant "dull" pain. OTC meds have never helped.

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Welcome to The Truth About Talipes! Your comments are welcome, and strongly encouraged. We with post-club feet are the best sources of information about the issues we face. Join in! (If your comment fails to appear, make a second attempt - Blogger is known to have "issues" with Comment upload from time to time.) And right now, it seems it does not want to display comments on the main page, but it will show them for individual posts, so don't give up yet!!!