Congenital Talipes Equinovarus

Hope

Thank you, Ruth, for creating this site. I can see that you have offered a space for so many people to feel heard. Tears run down my cheeks as I read each story and understand the loneliness of so many of our journeys. I have never met another person with club feet, as far as I know, and have spent the majority of my life trying to portray myself as “normal” to everyone around me.

My name is Jen and I was born in 1970 in Johannesburg, South Africa with bilateral clubfeet. Casts were put on by day two and I had the first of my 13 surgeries at two months old. Like many, I spent my childhood with casts, tendon release operations, braces and doctor appointments. I hated doctors and hospitals. As a child, my parents were only allowed during visiting hours and the nurses tied me to the bed to keep me from standing on my feet. I even remember nurses telling me that they would call my parents and tell them not to visit if I didn’t take medicine or allow an injection. It was horrible! I had six surgeries on each foot by age eight.

In 1978, we moved to the United States (with a cast on from the last surgery) and I started 3rd grade. Kids were relentless with their questions and comments about my ugly shoes, braces, and my funny accent. I was referred to a new doctor at the University Medical Center in Tucson and he was my doc for many years. I hated going to the appointments because he always had 4-6 medical students with him and would talk about me as if I wasn’t there. After many years of him suggesting another surgery, a triple arthrodesis, I finally agreed at age 24, because I was about to be bumped off of my parents’ insurance. During the previous years, I avoided running sports and instead rode horses which was easier on my feet. I also enjoyed skiing, which somehow worked with the stiff boots giving me ankle support. I didn’t have a lot of pain, but he said the surgery was needed to correct my foot position and help avoid future problems.

After the “triple”, I endured chronic pain and reduced mobility. The fusion of my foot bones made anything weight bearing more difficult and uncomfortable and caused hammer toes and bunion-like protrusions from my gait. I continued to do as much as possible and have worked as a teacher for over 20 years.

While in grad school, I met my husband and started my adult life. In 2005, after the birth of my 2nd child, I was having excruciating pain and was limping badly. With a two-year-old and two-month-old, there was little time to be off my feet, so I went to a new orthopedic surgeon since my previous doctor had retired. He casually said that I should have a complete ankle fusion, which would be a 6-month recovery, most of it non-weight-bearing. When I told him that I couldn’t do the recovery with small children, he suggested I hire a nanny. Great advice for someone on a teacher’s salary:) So, I put it off and went back to him 5 years later. Same recommendation! I also went to a podiatrist for a second opinion and he too recommended the fusion.

Dring the past year, I essentially stopped doing any walking that I didn’t have to do. I used an electric scooter at school, never played with my very active kids or went anywhere that required walking. I started taking more pain medication and lots of hot baths. Last summer, I decided that I needed to have one last appointment or buy myself a personal scooter for the back of my car. My sedentary and painful life was not much fun and neither was I!

After asking around, I went to “The Guy” for feet and ankles in Tucson. He suggested an ankle replacement as an additional choice to the complete ankle fusion and said they would both address my pain. The complete fusion would eventually take a toll on my knees, hips, back etc… According to him and my research, ankle replacements have come a long way in the past few years, so I decided to try it. He had previously done the surgery on patients with clubfeet.

Today marks exactly six weeks since my surgery on Feb. 3rd. I am now in a removable boot and have just started PT with weight-bearing as tolerated. I am still very reliant on my crutches and knee scooter, but am beginning to feel more human. It is still very early in my journey, since I was told 6 months to 1 year, at least, before I am walking well again, but I am trying to be optimistic.

I feel like a could write a book here. There is so much about this process that is not seen by others. The emotional, psychological, physical part that only another person with a similar experience could understand.

Thank you for giving me this opportunity and I promise to keep you posted!

Posted in Clubfoot Stories
4 comments on “Hope
  1. Vincent P. says:

    I have never even heard of being able to have an ankle replacement, i am 23 years old now and have been dealing with since birth, my biggest issue is that i am now getting pain into the shin and the hip. I bekieve it is because i am walking on the edge of my foot and havent had time to get an orthodic made being as though i am still in school and trying to work full time in order to support myself. It has become excruciating at times to do any extra curricular activites since after about a mile of exercise i begin to get shin splints almost immediately. Any auggestiona from those of you whom have gone through it before?

  2. Ron says:

    I feel your pain. .literally. My experience was very similar and my mom said I used to kick my casts off as a toddler so they had to extend them past my bent knees. Mostly arthritis pain now at 45.
    Take care

  3. KELLI R PALMITER says:

    Your story has brought tears to my eyes, I feel as if we are one. I am 49 years old and I too rode horses, skied etc… The ski boots were very supportive and even though I always was made fun of for my crazy laid back style, I was fast and unbeatable, those were the days. I also had a triple arthrodesis last year and it has made my foot so much more worse, my gate is off by 19 mm’s now, my hips and SI joints, neck etc. is paying for the the fusion. The doctor fused me in a damaging position, for I can’t walk now without hyper-extending my knee way out. I look like a hunch back. It is also very painful now, way more now than before. I am considering the Ilizarov surgery, I am scared, for I have had about 20 operations and the doctor said I could loose my leg.I guess I have no skin left to use due to past operations. Please let me know how you are doing! I didn’t know that it was possible to replace a joint in a deformed foot. I would really like the name of your doctor so that I could get a second opinion from him about the surgery that you had, who knows maybe that will work for me too. I have been to so many doctors that most of them just expect me to give up, but I am young at heart and I am a fighter and I want my leg back. I also have bilateral club foot with the left being severe. I appreciate your openness to tell your story, everything that you said about the hospital tying you in the bed and the nurses threatening to tell you parents not to come if you didn’t take your medicine, they also did to me. I felt so alone, I spent the better part of my first 11 years in Shriner’s hospital for crippled children, San Francisco, Ca. The hospital has since been closed, it reopened in Sacramento, Ca. Please let me know how you are doing, sincerely Kelli

    • KELLI R PALMITER says:

      FOR JEN PLEASE LET ME KNOW HOW YOU ARE DOING WITH YOUR NEW JOINT, IT HAS GIVEN ME HOPE! Most doctors will not touch my foot, they expect me to just live this way, well I can’t, I have an adult autistic child that I have been taking care of for 20 years, bless her heart and I expect to be able to continue to care for her into my later years, but something must get done to correct the bad fusion before I completely blow out the rest of my body, walking all out of alignment is taking a toll on my low back, hips, SI joints, pelvic alignment and neck. please again let me know how your getting along! You are my inspiration,and my hope. Kelli

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