Congenital Talipes Equinovarus

Struggling adult with Clubfoot

Hi All

I just wanted to see if anyone else struggles and what they do. I am 30 years old and was born with clubfoot in both of my feet. I have had numerous operations from been 6 weeks old, however, all I hear is now that you have to live with it and take tablets for the rest of my life and look to rest your feet. I am currently taking tramadol and amitriptyline for when I go to bed. from waking up in a morning I have stiff joints and struggle to move with my ankles and when it comes to about 2pm in the afternoon my feet swell up and have this burning from them with sharp shooting pains going up my calf and stiffness, also sometimes at work I have to place an hot water bottle on my feet because they are so cold and don’t seem to get warm but the doctors just say have to live with it, does anyone else have this? I am wearing the shoes that I get made for me but I don’t think they work because I still have pain. I can’t even play football with my little boy in the park for longer than 10mins because I know the next day I am not going to be able to move freely with my feet.

I am currently working 40 hours have a nice desk job but the pain still comes. My partner wants me to reduce my hours but this hurts my pride.

it has been mentioned about fusion on my feet. has anyone had this done? I know one day I will end up with walking sticks but does anyone have any suggestions what they do?

Thank you for reading and listening.

Posted in Clubfoot Stories
12 comments on “Struggling adult with Clubfoot
  1. Casey Alexis says:

    Hi everyone, I’ve never thought about sharing my struggles and triumphs of my severe bilateral club feet, but now I see how many people struggle everyday with this pain like I do. I’m 26 years. I was born in June 1990 and was adopted 8 days later. If it wasent for my family i wouldn’t be walking. I had my first surgery at 6 weeks old, and my last surgery was last year.I’ve had over 15 surgeries so far. Last year I had surgery to try to straighten out my 4th toe and they amputated my pinky toe, due to much pain. All my toes curl under but my pinky toe was the worse,and it just caused so much pain pressing on my shoes. This was the 2nd time I had surgery just to straighten out my toes. It worked for a little bit, but now theyre curled back under. But right now my most dailey pain is my left foot( which I also call my bad foot) . My ankle keeps getting locked up with no warning. I’ll take a step and at any moment I will get shooting pain all throughout my ankle and up my leg. I’ve gone to the doctors quite a few times about this. They said I’m to young for anKle replacement, and he wanted to fuse my ankle. I only have about 10% flexibility in this ankle as it is, I didn’t see any point of the fusion, since my ankle is mostly all fused already. I also think it will cause more harm to my hips and back, which is already acting up much more on a dailey bases. Does anyone else have this pain in there ankle? I also can’t squat since my knees hyper extend backwards, so this brings much pain to my back, and I’m starting to have alot of back pain everyday. It seems like everyday I’m living with diffrent pains in my body due to my club feet.
    Since iam adopted and don’t know much about my biological family. I want to know if this could get passed on genetically to my kids if i get pregnant?I would hate for my children, or anyone else to go through everything I’ve been through, and still going through.

    I’m thankful that I was able to play soccer, basketball and volleyball for about 10 years. Alot of doctors didn’t think I was going to be able to play sports. But I always pushed through with much pain. I just got a job where I’m driving most of the day, so I’m off my feet which is a great plus. Just standing or walking for a 15 minutes causes me pain. Does anyone have any suggestions, or word of wisdom for me to follow as I’m still young. And very scared of the pain that I will consume as I get older?

    • KarenJ. Ostby says:

      Casey,
      Where to begin-you’ve had many more than my 12 surgeries, none on toes. I wondered if they were part of clubfoot. Mine were 3 mos.-12 yrs., from the ’40s to 1958. As an adult, I’m doing well w/1 loose staple, walking on side of L ft., no longer flat. It’s the least of many unrelated medical problems. I’ve had 35 surgeries. It’s 1 day at a time.
      I wonder why you’re in such pain. By 1990, I’d expect improved treatment. My L ankle is fused-never explained. No pain. Can’t stand long due to rheum. Arthritis. How about a 2nd opinion? Since I’ve read, I’ve realized how fortunate I was so long ago. Good luck, thinking of you. Good job for you. Amazed you did sports. I have weak leg muscles. Most do.

  2. Nichole M. says:

    Hi everyone. I’m 38 yrs old and was born with clubbed feet as well. Back in 1980, my surgeon put my in a medical magazine for having the worst clubbed feet ever seen at that time. My feet were turned in, twisted upward and I didn’t have heals but they found that my heels were connected to my calfs. I have had 13 surgeries, my first at 8 months and my last at 15. They have always wanted to amputate but my parents said no way. My surgeon who is on the medical board went to his other medical associates and asked what they thought about performing and ankle replacement. They all discussed and said NO. Because I’m young and would have to have another one by the time in 60 and they said I had a 50/50 chance that it would cripple me. So, they wouldn’t do it. Anyways, I’ve been disabled for many years but I decided to go back to work and I’m on my feet all day. They swell so bad that it feels like I’m walking on marshmallows and get so swollen that I can press into my foot and leave massive indentations. My feet seize up and have shooting pain all day long. I’ve tried good shoes, orthotics…braces and nothing seems to help the pain. I’m tired of being on pain pills but I hurt to bad. There are days I can’t walk (I limp)….please someone tell me there is hope. Lol I’m half tempted to amputate at 38. But then I was told that I would still feel pain. Ugh. Has any shoes helped others that I don’t know about? Or anything you have tried that has helped? I’m so miserable and tired of hurting everyday all day. I know have hip problems, si joint problems and disk problems. Ugh. People just don’t understand how bad people who have clubbed feet hurt and have hurt their whole lives. I’f anyone’s has advice please help. Thanks.

    • Karen O. says:

      Nichole,
      I know,been there. Mine were severe too. Turned toward my face. I was fortunate to have a surgeon who enabled me to walk after 12 surgeries. 3 mos.-12 yrs. I wore “regular shoes” by 14, after adapted ones. I swell also, used to wrap each overnight in an Ace bandage to reduce it or before an important event-finally gave that up. Around age 40, I had molds of my feet made by a podiatrist. I was naive and didn’t realize they’d look exactly like ME! They were more comfortable, adjusted for my curled toes, calluses, fused ankle. I had another set made, looked better & am still wearing them because I can no longer find someone to make new molds and send for shoes. I re-sole them good luck, try to find a seated job or speak to your boss about needing a atoll or chair. I’ve seen someone in retail as a cashier in a seat. If you are in the US, they have to provide modifications. You CAN do the job. You need a seat.

  3. Lisa says:

    Yes, and I was wondering how to treat my swelling and pain, so today I went to the pediatrist and found out I have arthritis in my ankles, and will have to wear braces for the rest of my life. I’m almost 17, so I am really upset. The good news is they will help a lot with pain, but the bad news is that I may have to have surgery at 25 or 30 to completely fuse my joints. I am really devastated. I thought I would have more time.

  4. Rikki Cane says:

    thank you so much for the reply, I am due to speak again with the doctor in the March so I will speak to him and let you know what he says.

  5. carls says:

    Yes! My feet are always freezing!! I have bilateral club foot and all of my surgeries were done before 6 months. My feet hurt all of the time especially after walking around. I never considered getting see for it though. I can’t stand on my tip toes and I cannot balance on one foot. I never considered special shoes all though the Shriners made me plastic inserts to wear in my shoes to help build the arches.

    • K Ostby says:

      Carl, I had the same and am amazed you had all surgeries by 6 mos. The only explanation for my 12 surgeries 3 mos.-12 yrs. Was my bones had to grow, reach maturity, my n’t. being part of that. I can’t help but recommend finding an ortho with experience w/clubfeet. Perhaps at a major med. Center. I would think you need more support, surgery or other. I wore regular shoes after adapted ones from 14 to about 40 when I had molded shoes made. Now, at 70. I can’t find a podiatrist who makes molds. They are more comfortable but will resemble you. Good luck finding relief.

  6. kelli says:

    I am 49 year old female that was in great shape until I started having more surgeries in 2008, I also had multiple operations starting when I was about 1 year old until the age of 11, the doctors put casts on my legs at 24 hours old, I was born with bilateral clubfoot deformity, with severe clubfoot on my left. I have had 2 more operations on my left foot, one in 2009 which was a tendon lengthening on the inside of the left foot arch and a heal slide (failed surgery), and a triple arthrodesis (fusion) Feb 12th 2015 (failed surgery), and another on my right Achilles 2008 which was tendon lengthening and also a tendon transfer, the doctor hooked my Achilles to my big toe ligament, the right foot which is my good foot, as I call it, healed after about 2 years, but I always experience severe pain in my heals and inside arch, I also have many other aches and pains in the bones themselves, shooting, stabbing, throbbing aching, if I stay off it it seems to be ok, the swelling is bad in both feet, especially at night, My left foot, well that’s another story all together, the heal slide and tendon lengthening was a disaster, a complete failed surgery that caused major damage to the foot, so much damage that a different doctor spoke to me about leg shortening, amputation. I could not except that answer, so since 2008 I lost my job, was put on disability and was pretty much wheel chair bound, however I did use my crutches. The fusion which I just had in 2015 is a mess, the doctor fused me in an 80 degree angle instead of a 90 degree angle and now I am really messed up. The fusion placed my foot in such a way that I feel more crippled now than ever before, enable to walk I have to completely hyper extend my knee out and lean forward, I have spoken to 4 other doctors that all agreed I was fused in the wrong position, the fusion was supposed to take away my pain and instead it has caused me major issues, my deformed bone had movement before the operation, not much, but enough to be able to keep my heal on the floor, now my heal can not touch the floor unless my knee is completely hyper-extended. My hips are 19 mm off and I now have problems with my SI joints, Right hip, neck, back, you name it, the rest of my body is paying for the fusion. It is like the doctor fused the foot in its unusable deformed state, I am not sure how to explain it to you, but it is just not right! On top of that, I have had so many operations I have no soft tissue left and almost didn’t have enough skin for the doctor to close after the fusion. To make a really long story short, I have recently went to another doctor that just removed 6 pins from the fusion ( pin removal Jan 15 2016), the pins were problematic, they were causing me pain. Now I am again thinking about amputation or a different surgery called Ilizarof , there are big risks now that have have no soft tissue left, PLEASE PLEASE, before you have the fusion ask about the shape of your bones and the deformity itself and how the fusion will affect your gate after its done, make sure that you speak to him about placing your foot in a 90 degree angle and if that is even possible with your bone structure? My aunt had a fusion and shes doing great, no pain at all, BUT SHE DOESN’T HAVE CLUB FOOT DEFORMITY! I can’t stress to you enough about how much MORE pain I am experiencing now, not only with my feet but with my hips, SI joints, back, neck etc. Please be clear on everything before you decide to fuse, ask tons of questions about how the surgery will affect the rest of your body after its over. Take care, Kelli

    • Sara says:

      I cant thank you enough for posting your experience as i am not wearing well and my right club foot is failing fast. My gut feeling has been telling me to just keep going, rub on the gel and strive ahead! My gut feeling was if i went to the doctor about my foot i would imagine a fusion would be spoke about and pins in my curling toes etc and at 47 it is just not sitting right with me. Your post has confirmed my fears and i am devastated to read what you have been through. I would love to chat if you would like that?

      • K Ostby says:

        Kelli & Sara
        I am so very sorry for your difficulties in these more modern age. I’m 70, was born with severe bilateral clubfeet turned around toward my face. I was fortunate to have 12 surgeries, ages 3 mos.-12 yrs. Which enabled me to walk. My feet are the least of my problems. Rheumatoid arth. Struck especially my back at 41. Progresses, osteoporosis left me bent over. I wish I had advice other than find a different ortho who can help you. I’m familiar with heel birds. Had 3 surgeries. I have curled. Scrunched toes which I don’t think are seen often with clubfeet. I never felt handicapped. Deformed (hate that word). We are not on an assembly line with defective parts. I abhor those words. They lead to a self-fulfilling prophecy. Please don’t amputat & give in. It won’t improve your life, in my opinion. There must be someone more knowledgable at a major med. Center. I had 1 ankle fusion-who knows why. No explanation back then. Good luck, perhaps try a pain management practice as I do for my severe back pain.

  7. Jill Harold says:

    Join the Facebook group “adults/teens with Clubfoot” and ask there 🙂

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