Congenital Talipes Equinovarus

Clubbed but not Beaten

My name is Steve Cox I was born in December 1960 in Perth Western Australia with 2 club feet. My right foot had a 45 degree twist, but the left foot was far worst being completely backwards and upside down.

Surgeries started when I was a few hours old, my specialist was a Dr Rowe and I’m not aware of the method used but have been told that the operations on my left foot was experimental and was the first to be performed in Australia.

My right foot was corrected with a few breaks and casts till about the age of 3, and hasn’t been an issue since. My left foot however underwent several operations to reconstruct the bones and tendons. My Achilles tendon has had several lengthening’s during my childhood and the last one was done when I was 19. At that time because the Achilles was operated on so many times the surgeon had to do the lengthening over a previous area due to the extensive scar tissue.

I started school when I was 5, and it was only a few months before that my last cast was removed and I was only just learning to walk without the hindrance of a cast. Throughout my school days I was always teased because I had a heavy limp and I learned to hide it by throwing most of my weight to my right leg to disguise the limp and to this day I still do that and can fool most people. But when I’m in pain though I can’t hide it.

After the lengthening at 19 I managed to get to 38 before I started to have troubles again. At that time the doctors I saw said nothing could be done and I’d just have to live with it. I got to about 43 and the pain I was getting turned to cramps that would last for several hours and sought help again. I met a young orthopedic surgeon who thought he could “grow” a new tendon but after several tests & MRI’s it was found that the Left Achilles was dead tissue over it’s entire length and is inoperable. The diagnosis was when (not if), the Achilles breaks the best course of action will be amputation below the knee. He estimated this would happen within 3 years.

Well I’m 55 now and still waiting for the Achilles to break, the cramps have intensified into days rather than hours with the longest cramp so far lasting 7 days and the muscles in the lower left leg have withered away to almost nothing. At all times my lower left leg is in a constant state of cramp ranging from mild (bearable) to intense (give me an axe). Walking is very limited to short distances, walking anything longer that 100 meters will bring on a severe cramp.

I’m now not looking forward to the prospect of loosing my lower left leg because I now have severe arthritis in both knees and both hips which will require replacements in the near future, with my right side being the worst as it takes most of the weight. Also, because of my left leg is shorter than the right this has caused several other issues in my back which restricts bending.

Whilst I don’t regret all that’s been done, my parents had the option of amputation of the lower left leg when I was born. In hindsight I think amputation back then would have been better. That said, I’ve achieved a lot in my lifetime and still try to enjoy life as much as possible by challenging myself to work around the limitations. Since our boys have left home my wife & I now enjoy traveling as much as we can in our motor-home traveling this great country.

I’d love to hear from anyone who has had amputation or facing it and your opinions on stump verses the “screw on” prosthetic as I’m still undersides which would be best.

Posted in Clubfoot Stories
8 comments on “Clubbed but not Beaten
  1. Andrew Merik says:

    has anyone here had calf implants for their club foot???

    desperate to see someone’s results 🙁

  2. Kaylene says:

    I am just fascinated reading all these amazing stories. I am now 36, born with bilateral talipes. The worst case seen in nz at my time of birth. I am now living in Perth and living a normal life but in severe pain everyday. Since giving birth to my two boys I have struggled to lose the weight which is causing extra strain on my poor feet. Am on the waiting list to have my ankle rebuilt again as my last surgery was at 19. Have had over 45 operations all up now. Have never met another adult with clubfeet so am very excited to come across this page. I struggle with self confidence and would never think of wearing shorts or skirts and don’t even ask about the struggle with shoes what a bloody nightmare ha ha. Was wondering if anyone has had calf implants or thought about having them.

  3. Billy smith says:

    Hello Steve, I’m the same age with the same problems as you except both my feet were facing backwards. Like you I was told no more could be done and amputation offered.
    I sold my business (commercial fisherman) in 2007 intending to see a bit of the world before this happened.
    I got bored and started cycling. It started off 3/4 miles but soon became 30/40 miles. My feet soon returned to a normal colour whereas before they were a blackie blue in places around where my operations took place. I can’t grow muscle in my calves as both my ankles are fused but I’ve got thighs now like a pro cyclist.
    It’s now been 9 years since I was offered amputation. I don’t feel I need it done. I’m convinced the cycling increased the blood flow to my lower legs and ankles and made them more healthy. They look normal apart from the thinness.
    I now do 70/80 mile rides without too much trouble wearing AFO’s. I wouldn’t suggest using AFO’s all the time to walk as they will in my opinion do more harm than good but there great for biking.
    I’d advise you to not got down the amputation route just yet. Give cycling a go and see if you can improve the health of your lower legs.

  4. Kyhia Einersen says:

    Can you please tell me which doctors you have seen in Perth?

    • Billy Smith says:

      Sorry I’ve not replied sooner Kyhia, I didnt know anyone had seen my post. I use Kevin McGhee at Apple tree clinic near Dundee

  5. Meggan Welch says:

    I am only 24 but I have had multiple surgeries and corrective measures through out my life. My foot now looks straight but is always swollen, has limited mobility, and I cannot walk without pain. I am considering a lower limb amputation so that I can have an active life. I would also love to hear from others that have made this choice.

    • Barbara baker says:

      I am 56 years old both geet severely clubed had surgeries as as baby and achelies tendon lengthened in both legs with aggressive therapy throughout most of my childhood. I had a pretty normal life except for the cramps all my life. Now my left ankle is solid fused and my tendons are drawing up more and more tight and its like having a pegg leg. I am in so much pain anymore I can hardley stand it I cry almost every night sometimes I wake up crying and in p ain. If I was a little younger I would do it in a hartbeat. Best of luck to you

      • Billy Smith says:

        I know were all different but I would put having amputation on the back burner until you have explored every available option.
        9 years ago I sold my business in preparation for amputation with the same problems as you (both feet) After a few months with nothing to do I started looking at alternatives. I still have my own feet and can now walk unaided without crutches or AFO’s using custom made insoles. I believe a lot of our problems are brought on with inactivity.
        Accupuncture helps greatly with the pain. But you have to find a good accupuncturist. Theres lots of cowboys out there!
        Cycling – which is what I do, will build muscle and increase blood flow. I started off doing one or two miles a day I can now do over 100 miles. I am just back from cycling 2 stages of the Tour de France and also climbed Mount Ventoux, reputed to be the toughest climb in cycling.
        Have some belief and don’t give in easily.

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