True Tarsal Coalition Stories

My first entry in this blog, "What is a Tarsal Coalition?", generated a monumental response from people suffering the effects of tarsal coalitions. In just over 48 hours, more than 1,100 people have read that article, and I have received numerous horror stories from TC sufferers.

Following are only a few of those personal accounts. Names, ages and specific locations have been changed to preserve anonymity. However, all of these experiences are real, and they prove the extent to which those with tarsal coalitions have been left to suffer unimaginable pain, while attempting to acquire adequate care through their countries' medical and governmental systems.

Remember, these are only a small fraction of real accounts from real people. If we think of ourselves as humane to any degree, these stories represent a major global injustice, and it is our duty to ourselves and others to correct how we view and treat tarsal coalitions before future generations are forced to similarly suffer lifetimes of pain.

My thanks to all who submitted their stories.

Real TC Stories from Around the World

Gillian, 45, Canada: 
"My TC is in my left foot, and I also have a similar-looking "dent" in the exact same location, only in my case it's where I had the triple arthrodesis at 14. I never used to have a dent, but it's like over 30 years the bones just collapsed.

Interesting that I've also considered foot amputation, but realize the phantom pain would probably just feel the same. I think the worst thing for me is having to explain the condition over and over to doctors, and the only reason I know as much as I do is because I did a research paper for a university osteology course.

My doctor actually told me that disability isn't for 'people like me', such is the massive misunderstanding and underestimation of this condition. If disability is not for people who've had five surgeries and a chronic, degenerative condition then who exactly is it for? People's attitudes seem to be 'Since I've never heard of it it must not be a big deal'."

Melinda, 32, USA:
"Bilateral subtalar joint coalition over here too! I think I'm going to share this. It's frustrating because people are always saying "Oh just tough it out, you're fine". My husband even compared my depressive realization that this is only going to get worse with time, not better, to how he felt when he had really bad acne in high school. Which I'm sure was an awful feeling but I can't find the idea of acne comparable to wanting to have your feet amputated."

Kris, 42, USA:
"I will live life the best I can for as long as I can. But even today, my family isn't understanding why the thought of a walk around the block is too much! It is hard for others to understand how bad the pain can get, especially when it's been raining!"

Judy, 51, USA:
"Even decent podiatrists don't have experience with this condition. When my son (then age 11) started having frequent ankle sprains, my existing podiatrist actually diagnosed him with tarsal coalitions in his left foot based on an MRI. After a month of physical therapy, he then sprained the right ankle during a PT session. MRI of the right foot also revealed tarsal coalitions. But we were told to wait until he was full grown to seek treatment because that podiatrist didn't know how to treat the condition. It turned out that was bad advice and we are thankful we didn't listen to him and sought a second opinion after a year of increased pain, more ankle sprains and stomach problems created by anti-inflammatories. It took a while to find a doctor who was experienced with this condition and had done the surgery before, but we did."

Becky, 25, Canada:
"Most podiatrists have never even heard of the condition; let alone have experience with it. I went to at least 40 podiatrists between age 11 and 19, every single one of them just told me that I was flat footed (I'm not flat footed, even with tarsal coalition) and to wear orthotics, which made the pain even worse. It took paying a whole lot of money to see a podiatrist from a different state to get an accurate diagnosis with Tarsal Coalition, and then be told that I'm not a suitable candidate for surgery but could have been if I was diagnosed earlier. This podiatrist had heard of the condition but had never actually seen anyone with it."

Nadia, 36, USA:
"I'm going to be having removing the coalition, rebuilding the arch with a graft from my hip, relocating my heel, relocating my big toe, removing a tendon. I'm worried at my age, that the surgery(s) won't work. If not that's a long wasted year hoping to recover. And if all that doesn't work and I still have pain and lack of mobility, then what? That's my right foot. Left foot will be reassessed next year. It's all so overwhelming."

Raquel, 34, USA:
"I'm in the 20% that surgery made worse. It's a gamble."

Jeanette, 55, USA:
"I think one of the problems is that it presents differently in different people and in different places. Mine is cuboid and navicular bones fused both feet, but just now at age 55 I am having trouble with my left ankle. Problems with left knee giving out since age 50."

Lacey, 22, USA:
"So I went to the dr today... All he did was put me back into a freaking cast... Wouldn't give me injections because "I'm too young" wouldn't do a mri or a ct scan because "too much radiation for someone so young and healthy" I'm so pissed off I bursted into tears crying, I'm a waitress and he expects me to walk in this walking cast no pain meds no nothing and thinks it's gonna freaking change I just got out of a cast 2 months ago.. What difference is this gonna make? I'm just so frustrated I hate this stupid foot crap. It's really been getting the best of me.

I've been in and out of the hospital since I was little because my feet would be so bad I couldn't walk, and I'd cry and my mom would feel bad. The doctors kept telling her I was lying or its just tendinitis. I didn't find out I had tc till I was 20. 

The sad part is I wanna sue my doctor for saying I was lying and misdiagnosing me and discriminating against me but honestly I feel like it would be a waste of time."

David, 35, USA:
"Anyone who doesn't believe you, drop a concrete paving slab on their foot so they can learn some empathy!"

Trevor, 31, USA:
"I know your pain!!! I have it in both feet, and experienced this as well. I was taking nearly 12-13 ibuprofens a day to lessen some of the inflammation, but I quit doing that because I was afraid if I did that too long, I'd mess my kidneys up. My orthopedic surgeon prescribed me custom made Arizona afo braces, but they didn't work. The only thing that's going to help me is surgery, but I can't do that financially right now. I tried filing for social security disability, but even though I have this crippling disability."

Tammy, 26, New Zealand:
"When I broke my ankle they wanted to operate immediately and I had to get extremely assertive . They had never heard of tarsal coalition, and I had to repeat over and over again that I was not going to be operated on because they'd open me up and find the coalition. That my foot looked weird not only because of the ankle break but principally because of the coalition."

Janice, 26, Australia:
"I am 26 years old. I was diagnosed with TC 3 years ago but I have struggled with the condition my entire life. As early as age 8 I began to experience symptoms. Some days I could run, other days I would crawl around the house because I was unable to stand up. It wasn't until 3 years ago I had a fall and started seeing a specialist. In 2015 I had a child and I feel like my symptoms have increased tremendously. I unable to keep up with my job, I have increased pain in my ankles and now my knees, hips, and lower back."

Justin, 35, USA:
"I'm 35 and have been living with foot pain since my teens. Only found out this year that I have TC and my joints are becoming arthritic. One of my ankles has rolled also. Have been getting some relief from cortisone injections every 6 mths. But having a bad day today. Sometimes the pain is so bad that it makes me nauseous and I'm always so exhausted. Barely slept last night because of it."

Joan, 26, Australia:
"My feet completed fusion on their own whilst i was pregnant with my eldest. I have 4 different types of fusions spread out over my feet. Surgery isn't an option for me and i struggle to walk most days, yet i need to walk to stay fit as i have a bulging disc in my l4-5. It hurts me that i cant do all the things i want to do with my children. Pain meds don't take all my pain away either, sometimes they don't even work. "

Brian, 28, Canada:
"Diagnosed with a coalition in my left ankle when I was 15. I did the rounds through several specialists until I was about 21. Doctors told me at 15 that I was too old for a surgical reset. And that I was likely too young for a fusion if I could help it. When I was 21 I went to see a specialist (after a two year waiting list!) who basically said if I didn't want the fusion the only thing he could do was shorten a tendon in my ankle to help ease some of the more jarring pain. But he warned me that the ease of pain would only be temporary, and that there was a 3 month recovery time on the procedure. I have, to date, opted out of every surgical option available to me.

I, presumably like many of you, have the arthritis of an 80 year old in my ankle. As well as arthritis that has creeped it's way into my knee. For a few years in my early twenties I took celebrex to try to dull some of the pain. But I found it didn't work all that well, and my doctor warned me of its numerous associated health risks such as kidney failure etc. So now I'm down to a Naproxen twice a day, and the occasional Tylenol. Hardly ever is that enough, but what else is there right?

I have good days and bad days with pain and inflammation flair ups. But lately, as I try to get back into motion, they seem like all bad days. It's incredibly disheartening and has led me to spending many sleepless nights wondering if I should be exploring other options or doing something differently. Maybe I should reconsider one of the surgical options? I don't know. I'm not really certain on anything at the moment. … anyways, that's my rant. Thanks for allowing me to get this off my chest.

Drew, 40, USA:
"I've been dealing with the pain for 15 years, trying to get by with orthotics, but enough was enough! I finally went under CN resection last Wednesday. I think I was unrealistic in my own assumption on recovery timeline, so it is helpful to read actual (TC) experiences."

Joni, 35, Australia:
"Sigh, that feeling when you need custom orthotics that may help with the pain and walking, but going private is $$$$ and you're not severe enough for public assistance and have been placed on a waiting list. I cant walk most days isn't that severe enough????"

Ellen, 28, USA:
"I am tired of pretending that everything is okay, cause it's not. I am, simply said functioning! I am in pain and continuing like I am not. Can I just scream it to the world?

This pain is killing me at times, I have very bad days and some not so bad. WHY? I am tired of fighting with doctors, I know how much it hurts and I am not making this up! I am overly exhausted and not to mention frustrated. I am at all costs trying to avoid taking meds due to a mass that I have in a kidney. Yes, I have all kind of crap. Just realized that everything is wrong with me!! So, if everything happens for a reason, please tell me what it is?

I am not looking for answers, I am just frustrated, that's all. I have anxiety, not to mention I have OCD, that stupid mass in my kidney and now this. All I know is that almost all doctors mention the word arthritis. One said I had a fracture and there was nothing he could do, really?
Perhaps we lose empathy in our journey to find answers."

Marion, 42, USA:
"I have had 4 foot surgeries, and still in pain, I had another MRI and it showed lots of inflammation. My doctor suggests a fusion. What to do?"

Kerryn, 40, Australia:
"I have been in pain since my teenage years. I've seen many dr and specialists until I turned 30 but it just ended up costing me a fortune for no resolution. At one point I was diagnosed with 'pseudo arthrosis'. I had many tests and was told that at best, I'd be in a wheelchair from a young age. I gave up, had 4 kids and stopped looking for answers. 

People didn't understand the pain I was in and I made a name for myself as a hypochondriac because I'd seen multiple people who mostly said there was nothing wrong or I had simply 'sprained' my ankle!

Not long after I turned 40, I requested an X-ray for my daughters knee and while talking to my dr I asked if I could have an X-ray of my feet that were also sore. I got an callback due to the arthritis forming in my left foot and was referred to an orthopaedic surgeon specialising in feet... he looked at the X-ray and instantly knew what it was. Tarsal coalition.

I was given the option of a resection surgery with an estimated success rate of around 40% but a fast recovery or a triple fusion with a 90% success rate but long, hard recovery. I have opted for the latter and have surgery next week."

Hannah, 21, USA:
I was 18 when they finally figured out I had tarsal coalition. It started when I was young though; about 7 or 8. I played softball growing up and all through high school. I always would have so much pain after practice or games and I would be in tears. I never knew why. 

Of course I got checked all the time but nothing was ever found. I put up with this pain for years. My siblings and family and friends all thought I was crazy. I wouldn't be able to walk some days or keep back the tears because of the pain. I did have several sprains but they never found the tarsal coalition. 

When I was 18 after my last softball season I decided I needed to go and for-real find out what was wrong. My foot had no range of motion besides up and down movements. There would be times I would get up and couldn't walk for a good 10 minutes. So I went to the best Ortho the state and he diagnosed me with Tarsal Coalition. He said he could put me in a boot and if that didn't help he could do a resection. Also, he told me losing weight would help too. 

What people don't understand is weather you are over weight or not the coalition will always be there. I feel like a lot of doctors use that excuse. 

The boot didn't help of course so I did the resection even though the Dr. seemed as if he didn't want to do it. The resection surgery was 6 weeks recovery, 4 weeks no weight bearing 2 weeks partial weight bearing. The restriction minimized my pain for almost two years. 

After I started working as a host, I soon was in severe pain every day. I would cry after every shift and use my crutches or crawl to bed cause I couldn't walk. It is like a stabbing pain in my foot. I feel like metal penetrates through my foot. It is the worst pain ever. 

So I went to a ankle specialist who did x-rays and quickly said I would need a ct and fusion surgery. So he gave me a cortisone injection and orthotics to see if that would give me any relief while I tried to get insurance. A few months later I got insurance and was able to get a Ct. He found that I had severe arthritis, now at the age of 21.... crazy. 

The specialist did a fusion surgery to fuse the subtalar and talonavicular joints in my foot. I am now 4 days out of surgery. He went in and cleaned the cartilage and joints then fused them. Come to find out I had no cartilage at all. I was bone to bone. This surgery is 3 months recovery. 6 weeks no weight bearing. 2 screws and a bracket. I just hope that it will work. 

I have put school off for a year now due to my chronic pain and this condition. It has taken over my life. I push through and stay strong but you can only go so far. Nobody besides the people with tc understand the pain or the way that it depresses you. I wish there was a way to heal it and take it away for good, but unfortunately it is not widely known and there hasn't been much research at all."

Morgan Elizabeth, 22, USA:

At age 10, I was diagnosed with both talocalcaneal and calcaneonavicular tarsal coalitions in both feet. I had two resection surgeries on each foot at ages 10 and 11. Long story short, I am 22 now and still deal with everyday pain and have accepted this as a chronic pain condition. However despite the struggle, I have been able to conquer so much in the past 12 years. 

I grew up dancing at a competitive level and went on to become a member of my dance academy's dance companies. I was a very active member in my high school's dance program and company and recently this past spring I graduated from college with a bachelor of science degree in Dance. Even though my dance days now have to be behind me, I am grateful for everything I was able to accomplish despite all the physical challenges I had to face living with the chronic pain of tarsal coalition. I would have days where I could not get out of bed to walk, could not participate in dance events, and questioned whether or not my passion for dance was worth it. I doubted my abilities, wished I could have "normal feet" and at times wanted to give up. 


I guess my advice for any child (and their parents) discovering they have Tarsal Coalition is to please do NOT let it the best of you and decide how you choose to live your life. I hope you will have the strength to continue to do whatever sport and/or activity makes you happy. Of course you should follow the orders of doctors and listen to your body but also know that this journey will make you stronger and more grateful for the days where you are pain free and able to participate in your sport.

Belem, 31, USA:
I've been in pain for as long as I can remember. I was always told it was because of flat foot. I used orthotics while I was a kid, which helped a little but not much with pain. At 18, I was diagnosed with TC, both feet. I was told by 3 different doctors that i have 50% chance to get better with surgery and 50% to get worse. With too many stories about people having unsuccessful  surgeries, and I can't afford surgery and recovery expenses, i've decided not to get any surgery yet, because at least I still can walk. Yes, with pain, but I can walk.

As other people with TC have said, there are many things I can't do like walk or run without pain, but I always try to keep moving. I will not let TC stop my life. It is hard to live with pain 24/7; some days worse than others, but i will postpone the surgery for as long as i can handle the pain.


Zach, 43, USA (Author):
Please see "Zach's TC Story" in blog entries on the right.