Congenital Talipes Equinovarus

Still fighting

I was born in 1976 with bilateral club foot, I was able to be “corrected” with casting and braces. And of course remember none of it. My adolescence was normal, I participated in sports and lived a normal life, until 10 years ago. Well, that is when the pain really started, there have been other issues along the way, the biggest being that the ligaments in my toes are shrinking and I have fused joint hammer toes in 8 of 10 toes.

About 10 years ago the pain started, mostly on the right, by the end of the day, and I no longer have a job that requires me to be on my feet, I could barely walk and the pain was becoming intolerable, so I decided I need to go find a new ortho and get it sorted, after waiting about 6 months I got in. Once I saw her, she told me my toes are fine, but that I have a Mortons Neuroma, first thought is oh great something else! She started by giving me a cortisone shot, well that did absolutely nothing, so back I went, armed with information and decided to go the surger route. Several months later I had my surgery, everything went fine, the neuroma ended up being quite large, the piece of nerve removed was about the size of the end of my thumb. Recovery went really well, along with physiotherapy. Life was good again.

Fast forward 3 years and the foot pain starts again, this time though I also have major pain in my hip, I start by going to physio again, but it is no help, not sure he really knew how to treat me. So I head back to the surgeon and of course I have another neuroma, so we schedule another surgery. In the meantime, I start seeing a new chiropractor and I mention some of my issues including the pain in my hip, he looks at a few things and tells me because of my limp my pelvis is out, he does an adjustment and oh my, my hip feels normal, now every time I see him he checks it, and it makes a world of difference! I then have my second neuroma surgery, and everything goes well, I just have no feeling in my 4th toe right foot as the nerve has been removed on both sides. It has now been 3 years and I still continue to go for physical therapy.

But, of course, 9 months ago the pain came back, again it is mostly in the right, I do have some pain in the left, but my whole right leg actually doesn’t feel like it belongs with my body, not sure how to explain it. So I went back to the surgeon and she says, well I don’t want to operate on you again, not that I really want an operation, I just don’t want to go home every night and cry because of all the pain I am in. She tells me I need to go get new shoes. Now that is a chore for me, I have orthotics and and try and wear them, but I have some issues with them, but because of the hammer toes I have trouble finding anything I can wear comfortably oh, and the constant swelling doesn’t help.

So, now I am at a point where I am not sure what to do, I cannot find any relief, no pain medication works, I’ve only taken Advil or Tylenol 3’s, don’t really want to take anything stronger. I also don’t really have anyone to talk to about it all, as they don’t really understand, and I don’t know anyone who has gone through these things. I am not sure what to do now, do I go back to the same surgeon again, do I try a podiatrist or do I find a new surgeon? All I know is I am not ready to give up, I am not quite 40 yet, even though the lower half of my body feels it. I’m just going to keep fighting so I can keep living my life!

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One comment on “Still fighting
  1. Claire Flint says:

    Hi, I was also born in 1976 with a club foot on the right foot, due to a mild form of spina bifida. I was operated on twice in my very early years. My mum tells me they tried to manipulate my foot and had to take me every day to the hospital but this did not work.

    I have suffered mild pain for most of my adult life and I have made numerous visits to the doctors. The pain has gradually got worse and at only just 40 I wanted to try and sort things before I got older and pain becomes a lot worse. I was told to loose weight (which I have but the pain has not eased) , had plantar fasciitis, and that I was not born with a club foot. I asked to be referred to a specialist but the doctors refused, this prompted me to change doctors.

    The new doctors referred me straight away to a orthopaedic specialist, who said I had arthritis and that I would need an operation to have a new ankle joint. He also said I could have my Achilles’ tendon made longer as it had been cut. We agreed to not go ahead with any surgery until it was absolutely necessary, but he advised me to make it my mission to get some good insoles made.

    My new GP was quite shocked that I had not had insoles. I got insoles, I’m not sure if they are helping but they have straightened out my toes, so I wear them daily.

    Gradually the pain is getting much worse and seems like no one really understands the pain I have. I try to keep walking and active but it often takes longer due to the pain.

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