Congenital Talipes Equinovarus

Melissa’s Clubfoot Story

My Name is Melissa. I am 37 years old. My first surgery was when I was a few hours old. That was when the life-long struggle began-only no one knew it yet.

My mom was still unconscious from labor, and my dad was still in the waiting room. They called in a pediatric orthopedist immediately to perform minor surgery and casting. When my mom woke up, the nurse said to her, “I am so sorry about your baby.” She thought I had died because no one would tell her anything. My dad finally told her. They were so glad that I was alive and okay.

The orthopedist didn’t know how severe my club feet were. It was both of them. But, he knew at that point that I would need more surgery. And, I did. My last surgery was 4 years ago. He is still my doctor. He is now the best specialist in club feet. I was very lucky. I was born in 1975. What my doctor didn’t tell us until I was 15, was that he didn’t realize then that I had Type III, which was almost uncorrectable. Lucky for me, I had already had about 10 surgeries by then-so they weren’t going to give up now-and neither was I.

My right foot was much more severe than my left, so I had more surgeries on the right than the left. As a teenager I sometimes used crutches, or a cane. And recovering from surgery was always a wheelchair. Also, I have very little-if any-calf muscle on the right. There is clearly a noticeable difference between my right and left legs. My right side is also much weaker than my left. I cannot carry anything on my right side, because my right foot
cannot hold the weight-not even my purse. I have scoliosis because I am always naturally leaning to the left. I dislocate my knees and hips because they are out of proper alignment. I have extreme arthritis in my legs, knees, hips, and feet. I constantly break bones in my feet all the time from the slightest things because my bones are extremely brittle.

Over the years I have tried so many different arthritis medications, pain killers, motrin, etc. I finally decided about 10 years ago that the meds weren’t doing anything, and I didn’t want to be a medicine cabinet anymore. SO, I learned to get used to my pain. During my last surgery, I developed RSD (reflex sympathetic dystrophy)-more commonly now called Complex Regional Pain Syndrome. It is a disease in which pain signals are being sent to the brain that you are in pain continuously even after the surgery has healed, so your brain still thinks you are in pain and suffering-and the pain you feel is real, but there is no physical reason for it. I suffered from this for about a year, until I decided to go for electrical brain stimulation treatments (after I had tried everything else, of course other than spinal). This was an experimental treatment, consisting of 30 minutes of an external electrical probe sending stimulation signals to the pain center of your brain. I did this for 5  consecutive days. I then repeated this 6 months later, and then a year later. I am now in remission, and have been for 2 years. I am so grateful. I am also incredibly fearful of my next surgery now more so than ever before. But, I live every day to the best of my ability.

I have taken to riding my bicycle. I may not go as far as everyone else, but I go as far as I can-and that’s what matters. I keep my legs as strong as I can. I swim as much as possible, and I stay as active as I can be. I never give up. I may never wear a pair of high heels (I have to wear enormous orthotics, and can’t stand on my toes), but I have the fanciest sneakers anyone has ever seen. I have learned not to be self-conscious about my legs. However, I will not send a picture of my feet because still to this day, I do not like anyone looking at my feet. I prefer my face-because that’s what’s important. Like my mother always says, if you look at that picture, how would you know? No one would look at your feet 😉

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18 comments on “Melissa’s Clubfoot Story
  1. Jim Bergeron says:

    I am a 67 year old male who was born with both feet clubbed. I don’t remember everything about my past surgery but I do know I was told that a triple arthrodesis was done to both my feet. The doctors that I have seen in the last few years at New England Baptist hospital in the North East seem to think that my only alternative to the pain I have constantly is to fuse the ankles. Are there any mature(older) people out there who could tell me if they have undergone ankle fusion on both and been able to walk without to much trouble.

  2. Lawrence says:

    I’m in pain I was born with my right and left foot clubbed, my left being the worse and I’m 22 and having complications now, my mom didn’t get me proper treatment, I also always have lower back pain, I have scoliosis, my legs and joints and muscles are sore all the time, my work takes a toll on me as well, I move furniture and I have too. It’s my only way if work right now I can’t find any where else at the moment and can’t afford giving up my job, I don’t have a car, but my work is a 5 minute walk from my apartment so it’s convenient, but I don’t have time or any clue on what to do how tobget help for this and to find a doctor who understands what is going on. I dint know what I have or what stage but I was very active growing up and always ignored the slight pain. Now I’m 22 and wondering what to do with my self. I can’t afford to lose work but I’m going crippled I feel like.

  3. Andrea McLaren says:

    Thank you Melissa for sharing your story. I am a physiotherapist who used to treat babies with congenital club foot . Initially with plasters in the 1980s…then in the 1990s in the hospital setting it was Dennis Browne dynamic strapping and splinting and later into hobble boots with the bar still.
    Nowadays the gold standard of treatment is Ponsetti Method, plaster casting again n some surgery in certain cases.
    I now work in the community so do not work with acute cases. But 5 months ago I travelled as a volunteer to China to assist in an Orphanage. There I found a little baby girl with a severe Right Talipes Equinovarus. She wasnt going to be treated until I stepped in n found a treating facility for her. Her name is Xin Yi.
    I am raising funds to pay for her treatment as she is an orphan.
    If you can share her story…I would greatly appreciate it.
    My gofundme site I set up for her is https://www.gofundme.com/k3bnxk8k
    Thank you.
    I am passionate about helping club feet babies as one of my buddies from school had a severe one also.

  4. Perry says:

    Thank you Melissa and ever one else here for speaking up. This is the first time I have ever come across any adults talking about their experience, I am so grateful, according to statistics 1 in 1000 is born with this yet I have never met anyone else with this issue. My story is similar, I was born in 1960 two club feet same as the rest surgery right away, good news for me was that I really never had to many issues, a few sports I couldn’t do well because in my case I have limited ankle range. I am now at 55 having considerable issues with sore feet and pain, and staying employed because I can’t stay on my feet to long. Thanks again it is so good to finally know I’m not alone.

  5. Kimberly French says:

    I was born in late 1976 with bilateral club foot too but I now see I was luckier, it could have been worse! Melissa…YOU GO GIRL!!

  6. David Wise says:

    My name is Dave Wise and I have suffered all my life with the pain of clubfeet.
    I was born with two clubfeet.
    I sympathise with anyone who suffers from this affliction.
    I wrote a novel titled, “The Becoming”, in which there is a lot
    about the affliction of clubfeet.
    People in the clubfoot club might be interested.
    It’s available on Amazon
    Sincerely, writerdave

  7. Lorelei Dockery says:

    I had eight surgeries on my two club feet from infancy to about 12. One of the surgeries that I had was a hip rotation and I was told that my bones were cut and rotated. I was in a body cast for a few months, and thats what I was looking for information on. I have been practicing yoga lately and my hips have started bothering me quite a bit. My foot pain has definitely become more managable as I get older but I cant stand on my toes because my feet both work differently since I had a different surgeon for each foot.My feet are both very flatfooted and actually support my weight on a knobby bone on the inside. I was told I could have arches constructed for cosmetic purposes but felt that my feet would fall eventually anyway and I have had enough of surgeries. Has anyone else had the hip rotating surgery? I can not find the explanation of it online. Bicycles and knee high boots are definitely my best friends. I was very lucky to have a mother that pushed for my surgeries as she was told that I would not have been able to walk, and some wonderful Dr.s who performed experimental surgeries on me. I was born in 1977. I am always looking for ways to strengthen my body and its weaknesses. Its good to find some chicken legged friends!

  8. Steve Kritz says:

    My story sounds like many of yours; bilateral club feet, many surgeries, too much discomfort, hideous shoes and now at age 49 a hard time getting around due to pain. I am now contemplating a corrective surgery; triple arthrodesis, ilizarvoz external fixator or a below knee amputation…scary stuff. If anyone here has had one of these procedures i would like to hear from you as it relates to that experience.

    On a good note, Nordstrom will sell a split size pair of shoes at NO upcharge. If you can fit into “regular” shoes, support Nordstrom! I found this out as both my children were born with clubfeet. Fortunately for them, they are in much better shape then most of us.

    • Cathy says:

      So will Clarks shoe store!!

    • Meredith says:

      Hi Steve, I had a triple arthrodesis in 1989 and can give you some good info. Email me at photopro1@verizon.net

    • Jan says:

      What is it that is making you consider these options? I’m curious. I was born with two severely clubbed feet in 1965. As everybody else, I went through the casts, the “straight shoes”, and the surgeries. I was getting along pretty well until recently I mean, I’ve always endured leg discomfort, but about 7 months ago, the pain was becoming much more noticeable in my right leg. I saw my Dr quite a few times, where I was assured all was ok. Went back once again to complain about numbness and pain above the knee and kind of spreading down the outside of my leg. After an X-ray, a CT AND MRI, it has now been confirmed that I have some sort of tumour in my femur. They say it could have been there from birth. And that something (the way I walk?) may have triggered it. I am now awaiting referral to Mount Sinai Hospital in Toronto. I just came across this site and was surprised to see how many others are still living with issues. I thought I was the only one

  9. Debbie says:

    I am also a “survivor” of being born with a club foot in 1965. My surgeon was fantastic and by the time I was 12 I had already been a gymnast for 8 years and won many trophies playing softball through my early teens. Believe it or not, that club foot gave me more balance when running that my doctor thought possible!! I still can hear my parents yelling at me to “turn that foot out” throughout my childhood. However, the downside….I too have trouble buying shoes due to the 2 size difference and the club foot being wider, but I’ve always found ways around that. I wear a lift in my shoe as my leg is almost 2 inches shorter due to wearing a cast for so many years as a child.

    My question now is….when I walk anymore than 1/2 mile, the pain down the outside of my leg becomes some incredibly bad that I don’t want to move. This just started out of the blue. It’s not in the calf, but along the outside of the leg.

    Has anyone else suffered with this? If yes, is there a reason it is happening?? I, unfortunately, just lost my job so don’t have health insurance to get to a doctor so any help would be greatly appreciated!!!!

  10. J says:

    Thanks for the story. I’m 35, and also love my bike as a way to stay fit. I have a right club foot which also gives me hell, and causes me to hobble about most dramatically from time to time. My friends will sometimes get worried; Good Lord J, are you limping? – they’ll ask. – It’s not a limp; it’s a swagger – is the stock response. I have the works – arthritis, etc, but I find that many things do help a lot – good shoes (thank you, dear Lord, for Merrells.), wedges and supports. Straps when exercising, spacers on my riding cleats, etc. All of these things help, and I am unusually fit within my circle of friends. Many of my fully able-bodied friends are getting overweight and slow as they hit their mid 30’s and increasing quantities of booze, but my preoccupation with health means I’d leave any one of them in the dust if they were to jump onto a bike, and that feels good. So, there are many of us that share these things, and I hope that makes you feel better. Besides, you’re obviously rather gorgeous, so you are blessed in that sense! Whenever I get too annoyed with the pain, etc., I try to remind myself that I can actually move around, far better than many people without legs, or those who are otherwise incapacitated. So in an odd way, the pain can remind me of not just what I am lacking, but of all the wonderful things that I have. All the best to you.

    • HOPE says:

      I have right clubfoot. The same thing happens when I’ve walked quite a bit and will sometimes limp worse than other days. Sometimes I haven’t even walked much, my foot and let just decide they’re not up for it that day. Anyway the whole reason I’m replying is because my name is Hope…you’re Joy…aren’t we just aptly named ha ha ha

  11. sonny mathis says:

    I too was born with 2 clubfeet. I am 52 years old and in 1962 the doctors didn’t really know how to work on a clubfoot. The doctors told my parents I would be an experimental case. When I was born my toes were touching my heels and the bottom of my feet were turned up. My feet were put in casts until I was two then I had my first surgery, got more casts. The doctors got my feet good enough for me to walk and mom and dad treated me just like any other kid. They always encouraged and challenged me just like you would any other kid. After 7 surgeries on my left and 5 on my right, a tool box of staples, pins and screws. I work 40 to 60 hours a week. I have arthritis and it hurts like hell sometime but I tell myself at the start of every morning “I did it yesterday so I know I can do it today”. Thanks for your story’s and it sadness me to know others have to deal with the pain I have endured. Sonny Mathis Quinlan Texas

  12. Lindsay File says:

    Hi Melissa.
    I too was born with 2 club feet and spent a lot of my early years in hospital for treatment and plaster casts from knee to toe. The casts finally ended when I was about 13 but left me with one leg an inch shorter than the other and basically no lower leg muscle. Despite this I was very active playing cricket and hockey with casts on and a few years of rugby when they finally came off. Coming from an athletic family I got into distance running in my late teens and went on to compete in 9 marathons including the London marathon where I placed 1,300th out of around 20,000 competitors. In order to succeed in competitive distance running I simply trained harder and further than almost every one else to make up for my disability with strength and fitness. A combination of all the running, the treatment and club feet meant I ultimately had to give up running due to severe osteo arthritis. I then took up bike racing and I am still a very competitive cyclist racing on the roads and becoming something of a hill climber. Earlier in the year I completed a very hilly 206km race finishing in 15th place.
    Whilst I struggle emotionally at times with the “club foot look” and hate being in public without shoes and in shorts I have used sport as a means to feel good about myself and achieve things most people never manage to do even without a disability. This feeling of achievement has also enabled me to have a professional career, an extremely good marriage and children of my own. At 22 I also headed on an extended overseas trip of several years that took me all over the world.
    Like I guess many of us I can’t help but think “what if” particularly in respect of my running but on the other hand the challenges have made me who I am and given me experiences I wouldn’t give up for anything. I am inspired to read other stories from people like you. I only just discovered this page by googling club feet to see what came up and am so pleased to read stories such as yours.
    Lindsay

  13. Melissa says:

    Melissa,

    Thank you so much for sharing your story. I was also born with severe club feet and am 29 yrs old now. You have definitely been through quite a journey as I have. Thanks again, I know it takes a lot of courage to share!

    Melissa Schneider-Garcia

    • Anne says:

      Thanks for sharing your story Melissa.

      I was born in 1977 with severe Club Feet and have had numerous surgeries. The last one was when I was 12, they had to remove the ankle bone completely as the foot was so badly turned in, the bone was starting to come through the skin. This left me with a shorter leg and a limp.

      A few years ago I got a steroid injection that helped reduce the pain. I had scans and I was told I do have arthritis in my foot now. I do try and walk as much as I can as I don’t want this to beat me. I am suffering pain now and I was wondering if someone could recommend the best types of high top trainers that I can ware for support? I have always felt more comfortable in high top trainers but since I basically ware them all the time, even to work, they have to be black and I find it difficult to get them in a sport’s shop. I am in the UK so if anyone can help me, I would really appreciate it. Also, I have always tried not to take any kind of pain killers but I feel I need to now. It is either this or not walk at all and I don’t want to give up like that.. Has anyone on here taken pain meds or taking pain meds at the minute? I would be interested in finding out what works.

      My son was also born with severe Club Feet 14 years ago and although he has had a few surgeries, he hasn’t had as many as I had and he is doing well, the treatment has obviously changed so much in recent years. I’m so proud of him and how he just accepts it and carries on.

      I should also say that I am totally blind so my need to walk is very important to me, if I had to rely on people driving me everywhere, I would have no independence at all. I would just love to know that there is some way I can deal with this pain with comfortable high top trainers and pain meds.

      Your help would be very much appreciated. Thanks again Melissa for sharing your story!

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