At least twice a month, I get messages from patients who either are about to have subtalar fusion surgery or who are living with tarsal coalition and trying to figure out how they want to treat it. I’ve talked about both the condition itself as well as my experience with subtalar fusion surgery, but I’m asked a lot of specific questions that I haven’t written about publicly before. So I figured it was high time I compile my answers in one blog post. 

I am not a medical professional of any kind. Additionally, this post contains affiliate links. Thank you for supporting Kate the (Almost) Great®! 

Living with Tarsal Coalition: My Experience with Symptoms, Surgery, & More

Tarsal coalition was actually the first chronic condition I was ever diagnosed with, and it runs in my family. I was diagnosed in 2001 when my pain started, although it’s impossible to say what was the tarsal coalition and what was the undiagnosed autoimmune arthritis. I’ve tried to be as clear as I can with my symptoms and timeline, but there are plenty of times when it’s unclear if a symptom was RA or tarsal coalition. I hope that you will be patient when I repeat myself within this post as I want to be as straightforward as possible of what symptom was what. 

As always, I cite my sources whenever applicable. I also do my best to be as unbiased as possible. While that is always true, it is especially true when discussing my experience living with tarsal coalition. Please talk to your doctor about any concerns you have! 

Finally, while there is a whole section in the post on this, please know that there are plenty of people who living with tarsal coalition without surgerical intervention. My paternal grandmother has been able to deal with her with orthotics, physical therapy, and NSAIDs. My dad has run marathons with his. My particular case required a lot of surgical intervention but even within my own family that isn’t always necessary. 

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What is tarsal coalition? 

The American Academy of Orthopaedic Surgeons says, “A tarsal coalition is an abnormal connection of two or more bones in the foot” (x). The tarsals are seven bones that make up the hindfoot and midfoot, and one of these seven bones is the talus (x). 

While it’s hard to know the exact numbers – some people never have symptoms – it is estimated that 1% of people have a tarsal coalition (x). 50% of people with it have it in both feet (like me) and the other 50% only have it in 1 (x).

Tarsal coalition is a “genetically-determined” condition (x). Basically, this condition is caused by a gene mutation; the way I explain it is that my DNA thinks that there should be bone where there shouldn’t be. In my case, my grandmother has it and we think her mother had it, too. But it is caused by a gene mutation, and if that mutation was not passed down through your family, it could have occurred sporadically during your fetal development (x).

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What are tarsal coalition symptoms? 

The biggest one, of course, is pain. But that’s not the only symptom. 

Other symptoms include stiffness, flat foot, limping, and frequently spraining your ankles (x). Basically, your foot should move in one way and it might not, but it also can move in a way that it shouldn’t move, which is why frequently spraining your ankle is a symptom. 

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When did my tarsal coalition symptoms develop? 

In my left foot, my symptoms started in 2001. I first started feeling pain while I was active, then it continued after I was active, then it was most of the time, and then it was all of the time. As I mentioned, I twisted and sprained my ankle all the time. I think my record was 3 times twisting it in 1 week. 

I was only 10 at the time, so my parents and doctors (and myself) didn’t want to do anything surgical until absolutely necessary. While that’s true of all ages, it is especially true when dealing with the bones of someone who might still be growing. 

We also weren’t sure how much of an issue the pain was going to be, especially because we didn’t know the extent of autoimmune disease in my family. It’s still hard to distinguish when my RA started; if that’s what my pain in 2001 was or if the RA started several years later. What we do know is that, based on where the pain and RA were in relation to the tarsal coalition, they were interconnected by 2006 at the absolute latest.

My right foot actually didn’t bother me until 2017. Like, at all. The weirdest thing about that was it didn’t bother me much at all until Thanksgiving 2017, and then it became excruciating out of nowhere and was immediately a bad problem. As my surgeon said, the only weird thing about it all was it started out of nowhere and wasn’t gradual. Frankly, we were both shocked that it hadn’t been a problem until then, as I was diagnosed with tarsal coalition in both feet in 2001.

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Is surgery for tarsal coalition necessary? 

Like I said before, no; plenty of people never have surgery. 

Boston Children’s Hospital says, “About 75 percent of children with tarsal coalition never need treatment. And of the 25 percent who do, up to one half don’t need surgery” (x).

The problem is that there aren’t a lot of treatments for having a bone in the wrong place. Other than surgery, it’s all up to managing the symptoms (namely pain).   

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According to the Cleveland Clinic and Boston Children’s Hospital, non-surgery tarsal coalition treatment includes: 

• Steroid injections
• Casts
• Orthotics
• Wearing a cast
• Anti-inflammatory medication

Technically, there are 2 types of surgical treatment: resection and fusion. Resection is removing the bone where it shouldn’t be and fusion is the process of adding screws to create more bone so the foot and ankle can move less (x). However, the resection failure rate is over 30%, compared to a failure rate of 4-11% in subtalar fusion patients.

I think it also depends on your family history, if you have one. If anyone I’m genetically related to wanted to have surgery for their tarsal coalition, I would recommend going directly to the fusion based on my experience. 

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Did the subtalar fusion surgery improve my tarsal coalition symptoms? 

This is probably obvious based on my previous answer, but yes, massively. While I technically still am living with tarsal coalition – because it’s genetic and it’s still in my DNA – I don’t deal with it anymore.

My left ankle is my best joint by far and it only bothers me a few times a year. And while my right foot bothers me more than that, those symptoms are due to the RA in my foot. 

While it is hard to differentiate whether the pain from before the fusion was from RA, tarsal coalition, or both, it’s easy to identify what causes my current pain due to the location. I’m also unable to roll my ankles now, which also reduces a lot of possible pain. 

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Tarsal coalition surgery, before and after: what was my experience? 

I’ve actually written about this several times! Here’s an excerpt from What To Expect After Subtalar Fusion Surgery, where I go into depth on my experiences with my various foot and ankle surgeries: 

I have had 5 tarsal coalition surgeries. On my left foot, I had coalition removal in 2004, an exploratory surgery in 2006, subtalar fusion surgery in 2009, and surgery to remove the fusion screws in 2009. In 2018, I had subtalar fusion surgery on my right foot. So if you’re wondering what to expect after subtalar fusion surgery, or what it’s like to have tarsal coalition surgery in general? I’m your girl.

Here’s an excerpt from The Emotional Side to My Tarsal Coalition Surgery Recovery, which I wrote less than 4 months after subtalar fusion in my right foot: 

All surgery recoveries can be an emotional roller coaster (and I think that I’m in a position to say that authoritatively as someone who has now had 5 ankle surgeries, 2 knee surgeries, and 2 oral surgeries). This surgery, though, has been a super rollercoaster only comparable to when I had the same surgery on my other ankle. So I thought I would share what this recovery has been like with you guys. I hope this will help anyone else going through a surgery like this so they will feel less alone, or anyone who cares for or about anyone going through a similar surgery.

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How did my tarsal coalition and rheumatoid arthritis symptoms impact each other? 

I had a lot of RA damage around the coalition area. In both of my subtalar fusion surgeries, I had damaged cartilage repaired, scar tissue removed, and a synthetic bone graft done to repair bone erosion in addition to the actual fusion of inserting crews. Everything except for the fusion was for the RA. 

That’s actually why it is hard to pinpoint what pain was caused by what thing; if you have a lot of problems in the same inch or three of space, which is causing so much pain you can’t put weight on your foot, it’s hard to distinguish what feeling correlates to what cause. 

The reason I can distinguish now, though, is that my pain corresponds to when my infusion is and isn’t in my system. For example, right now I’m delayed on my infusion, and I’m dealing with a lot of pain. But I wasn’t dealing with as much of it as I was when I had the infusion in my system.  

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What did imaging show about my tarsal coalition? 

Hoo boy – where do I start? 

From the very beginning, the tarsal coalitions were clearly visible on x-rays, as well as on CTs and MRIs. The problem was actually that the tarsal coalition initially blocked doctors from being able to see the other damage in my foot … in 2008, at least. 

When my right foot started bothering me in 2017, I had imaging done which did show the scar tissue, cartilage damage, and bone erosion. In 2008, only the tarsal coalition had shown up on MRIs and CTs.

In regards to the tarsal coalition, though, I don’t know much about it other than the fact that it was there. I’ve had people ask me what type of coalition it was, and I don’t have the answer. This is not because no one told me, but instead it’s because so much other stuff what happening. If I went looking for it in my medical records I could probably find it, but I have no desire to go all the way back to 2018. (SO much has happened since then.) 

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Am I able to walk without pain? 

Short answer: no. 

Longer answer: no, but that’s because of the RA. Again, my left ankle is the best joint in my body. But it doesn’t mean that the other joints and bones in my foot – let alone my hips and knees – are okay. 

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How long did it take to recover from tarsal coalition surgery?

As my tarsal coalition surgery was influenced by the RA – both because there was RA damage and because autoimmune disease impacts all surgery recoveries – it varied a lot between 2009 and 2018. 

The 2009 surgery was probably 9 months total. I had surgery in January 2009, and I was super recovered and could even wear sandals by May. However, no matter what shoe I was wearing, the hardware in my foot caused major pain, so the screw and nut were removed in June. By the time I went to college in August, I was basically recovered, and that improved to fully recovered by the end of September.

When it comes to the 2018 version – same surgery, but more advanced rheumatoid arthritis – I would say 10 months was the point when I was as recovered as I was going to get. It’s a little wobbly because my surgeon discharged me in January 2019, but I’ve really never been able to wear non-sneakers without a problem. So from surgery date to being as fully recovered as possible, maybe 11 months. (The Fiasco slowed some progress, for sure.)

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Conclusion

As I’ve reiterated several times, I will always have the condition tarsal coalition. But I really don’t think about it at all. I think that if I were only living with tarsal coalition and not autoimmune arthritis and other conditions, I would never think about it again. If you need surgery, be prepared for a boring, frustrating recovery, but hopefully never dealing with coalition again.

My tarsal coalition symptoms started both when I was a child (left foot) and an adult (right foot). It is totally manageable. I have never regretted having subtalar fusion surgeries and if I had one regret, it would be that I didn’t have the surgery sooner.

Check out all of my blog posts on living with tarsal coalition here.

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