What is a Tarsal Coalition?

Famously defined

"Tarsal Coalition". The name makes it sound like some kind of government committee; e.g. "Washington Asset Building Coalition" or the "Coalition for Multicultural Affairs", etc. But, anyone with even a layman's understanding of human anatomy will realize that "tarsal" refers to a specific part of the human body; the foot, to be exact. 

The definition of "tarsal" is "of or relating to the tarsus". Simple, right? Yeah, but what the heck is a tarsus? Well, that's easy enough. The tarsus is "a group of small bones between the main part of the hind limb and the metatarsus in terrestrial vertebrates. The seven bones of the human tarsus form the ankle and upper part of the foot. They are the talus, calcaneus, navicular, and cuboid and the three cuneiform bones."

Did you get all that? No, me neither. Basically, the tarsals are comprised of seven bones which makeup the ankle and upper portion of everyone's foot. See? You're learning something already! So, what could a "tarsal coalition" be? 

Well, a simple Google search of the phrase will bring up thousands of websites; all of which have simply copied and pasted the same definition, and that's exactly what I'm going to do next...

"A tarsal coalition is an abnormal congenital (birth defect) connection that develops between the bones in the back of the foot (the tarsal bones). This abnormal connection, which can be composed of bone, cartilage, or fibrous tissue, may lead to limited motion and pain in one or both feet."

Well, that sounds simple enough, eh? Yep, an easy search, and we have found out about a strange-sounding birth defect. In novice language, a tarsal coalition exists when some bones in the back of the foot and/or the ankle grow together. Weird, huh? 



What's it feel like? Well, if you're simply surfing the Internet for random knowledge, all those websites' explanations will suffice. And, according to those websites, even sites like mayoclinic.org or webmd.com, "The symptoms of tarsal coalition may include one or more of the following:

• Pain (mild to severe) when walking or standing
• Tired or fatigued legs
• Muscle spasms in the leg, causing the foot to turn outward when walking
• Flatfoot (in one or both feet)
• Walking with a limp
• Stiffness of the foot and ankle"

Additionally, "While many people who have a tarsal coalition are born with this condition, the symptoms generally do not appear until the bones begin to mature, usually around ages 9 to 11. Sometimes there are no symptoms during childhood. However, pain and symptoms may develop later in life."

Okay, so now we know a tarsal coalition is a painful foot condition in which some bones in the rear of the foot have grown together over time. And, we know that accompanying symptoms could include flat feet, a limp, stiffness and cramps ... as early as the moment the patient is born. 

Aside from the whole "birth" thing, that doesn't sound too bad, does it? 

Treatments that may help

For those who suffer from it, a tarsal coalition might really cramp their style. Can they get any relief? Of course, silly! It's easy as pie, according to those thousands of websites. Treatments include:

• Nonsteroidal anti-inflammatory drugs may be helpful in reducing the pain and inflammation.
• Physical therapy may include massage, range-of-motion exercises, and ultrasound therapy.
• An injection of cortisone may temporarily reduce inflammation and pain. 
• Custom orthotic devices may be beneficial in distributing weight away from the joint.
• Sometimes the foot is immobilized to give the affected area a rest.
• Injection of an anesthetic into the leg may be used to relax spasms.
• If non-invasive measures prove unsuccessful in reducing discomfort and increasing mobility, surgery, consisting of either resectioning or fusing the afflicted joint may be an option.

Damn. All these treatments "may" be helpful, but there's no guarantee? What if they're not?

Well, lucky for us, there is no lack of knowledge about tarsal coalitions, is there? I mean ... the Internet is packed with information, so doctors must also know a lot about the condition, right? Wrong.

Is it common?

All of these websites refer to tarsal coalitions as somewhat "common"; suggesting that approximately 6% of the human population experiences at least one TC in one foot. However, according to the United States Library of Medicine, "far less than 1%" of the population has at least one tarsal coalition (Starmont, Peterson, 1983).

For the sake of discussion, let's say that .2% of the population has a tarsal coalition. Remember: That's two tenths of one percent of the entire population. This means that only 14 million people in the entire world have at least one tarsal coalition ... and only 600,000 TC patients exist in the U.S. That's right: More people live in Omaha, Nebraska than those who have one tarsal coalition. 

And, because of the rarity of TC's, most medical professionals simply have no idea how to treat them; let alone those who have heard of them. Sure, they may have heard something about TC's in medical school. But, chances are that, if they didn't study podiatry, they've never learned about them. Even many podiatrists (foot doctors) will never encounter a tarsal coalition in their medical careers.

Take me (the author) for an example. Since birth, I've had "bilateral subtalar tarsal coalitions". This means that since I was born, I've had TC's in the subtalar joint in both feet. The prevalence of my specific TC represents .001% of the population. This means that there are only 70,000 others like me in the entire world and only 3,000 like me in the entire U.S. (Bellapianta, Andrews, Ostrander, 2011).

 (Profile of author's left foot)

I have literally seen more than a dozen podiatrists in my life who have looked at my feet, shaken their heads and honestly told me, point blank, there was nothing they could do to help. One podiatrist even wrote me an excuse for an employer saying "Zach Jensen is walking on the medical equivalent of two broken ankles 24/7 and needs to be allowed to sit down when his pain is too great."

But, that doesn't mesh with all the information those countless other websites report, does it? How they made it sound was rather benign (non-threatening) ... maybe even only slightly inconvenient, right?

The bitter truth

What most doctors and even podiatrists won't tell their patients is that tarsal coalitions are more than an inconvenient occasional painful foot. Real symptoms of tarsal coalitions, taken from my experience and others include: 

• Bone-on-bone pain whether standing or sitting;
• Rigid muscles and tendons that never relax;
• Heel bones that move over time like glaciers to the outsides of the feet; 
• Easy stress fractures due to simply standing;
• Sprains caused merely by attempting to pivot like "normal" people;
• Full-leg muscle cramps caused by over-use of dysfunctional muscles and tendons;
• Tendinitis 
• Nerve damage;
• Blood clots and poor circulation;
• Atrophy in the calf muscles due to non-use;
• Arthritis in ankles, knees and spine, because when the ankle doesn't work, it takes the entire body to stand up and walk;
• Kidney failure caused by a lifetime of anti-inflammatory and pain medications;
• Irritable Bowel Syndrome (IBS), sensitive stomachs and ulcers caused by medications, pain and stress;
• Obesity due to the inability to exercise;
• Severe depression caused by chronic, lifelong pain and loss of mobility;
• Suicidal thoughts, because sometimes, no matter what, the pain never stops; 
• Strained relationships, because literally almost nobody knows the pain and challenges we experience;
• Chronic, unrelentless anger, because if we want to live, we are forced to continue living standing and walking on our broken feet;
• And, only after all of this has been well-documented will we even be considered for our country's Disability option,
• and even on Disability, it's extremely rare for Medicare (U.S.) to pay for a wheelchair so that we can get around without standing on our mangled and inflamed tarsals.

And, the primary reason for all of our continued suffering is that there is no dedicated medical classification billing code for "tarsal coalition", because it's so rare. So, due to the lack of TC knowledge in the medical community, combined with the lack of definition in the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO), patients with tarsal coalitions are often left to suffer excruciating pain with little or no relief ... all because no one has bothered to comprehensively represent tarsal coalitions to the health organizations upon which we rely for our care. 

 a page from the ICD

Only very recently, through the Internet, I have met others, who, like me, have begged their doctors to amputate their feet, because the pain is beyond imaginable. We have limped all our lives and jumped through all the hoops our doctors have recommended, and nothing has ended our pain. Because we are few, we are misunderstood by the medical community, ignored by our employers, stigmatized by our social circles and cast out like lepers in our schools and even in some families. 

On our best days, we can limp in extreme pain. On our worst days, we stay in bed, with numerous drugs and ice-packs, and if we need to, we are forced to crawl, like animals, to the toilet. 

This blog is intended to shed light, through real-lived experiences, by myself and others, on the condition known as "tarsal coalition"; for both personal and professional use. My hope is that the accounts described here will help the medical community better understand what it's like to live with this condition so that doctors and podiatrists will be better prepared to help us.

If a pet dog broke its leg, we would do anything to repair the leg or even amputate it so the animal doesn't suffer anymore. By forcing us to live with our broken feet, our medical communities are treating us worse than they treat their pets ...

... and we deserve better than that.

My left foot. Notice the heel bone on the outside. 

Bibliography
1. Bellapianta, Andrews, & Ostrander. (2011). Bilateral Os Subtibiale and Talocalcaneal Coalitions. Retrieved from https://www.scribd.com/document/243093176/Bellapianta-2011-Bilateral-Os-Subtibiale-and-Talocalcaneal-Coalitions-in-a-College-Soccer-Player-A-Case-Report

2. Stormont, DM, & Peterson, HA. (1983, December). The relative incidence of tarsal coalition. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/6641062