When I was 20 years old, I was standing in the bathroom, blowdrying my hair, and I realized my feet hurt too much to finish my hair without sitting down.  The pain had come on gradually, over many years I’d later realize, but that was the single moment that I realized there was a problem.  This was before you commonly used Dr. Google to diagnose yourself with foot cancer (or elbow cancer, shoulder cancer… you know you’ve Googled the same thing before, too).  I didn’t know what was wrong, other than knowing that I hadn’t recently injured my feet and that they hurt evenly.  I just knew that something seemed wrong.  I just never imagined how wrong.

I started off by scheduling an appointment with a local podiatrist. He was a kind man who asked a lot of questions.  We quickly ruled out sprains, strains and plantar fasciitis. He ordered a series of x-rays and MRIs, and said he’d call me in a few days with the results.

Back track a few years….

I spent the majority of my youth heavily involved in dance, gymnastics and cheerleading.  I danced ballet en pointe up to 14 hours a week and then migrated to cheerleading in high school which included hours of running, tumbling, hip hop dancing and stunting.  I was a strong athlete.  During these years I suffered a few nasty ankle sprains, and doctors were always a little surprised at how long they would take to fully recover.  But no one ever suspected there was a deeper issue.

So, when the phone rang and my podiatrist asked if I had a few minutes to talk, my 20 year old self expected nothing more than him to say that I’d need to take it easy for a couple weeks.  Instead, he told me that he’d found a subtalar coalition in both of my ankles, and that my needs were beyond his area of expertise.  He’d reached out to a colleague he knew, and he was referring me over to him.

A subtalar coalition is an uncommon condition where the bones in the subtalar joint of the ankle begin to fuse together.  It’s a congenital (but not hereditary) disorder that’s usually diagnosed in early adolescence, when the fusions are still mostly cartilage.  It is often misdiagnosed as a severe ankle sprain, making it especially easy to miss in people who are actively involved in sports that could lead to ankle injury.  When it’s found early, the joints can often be surgically cleaned out and repaired.  But, once the cartilage starts to ossify (turn to bone), there’s very few options beyond filling in the rest of the joint and fusing it completely.  My coalitions had ossified.

And thus began my foot journey.  Over the next 8 years, I had 11 surgeries on my feet, ankles and calves.

To start, I had bone harvested from my hips to insert into my subtalar joints, to aid with the fusion.  I had 4 inch screws drilled into my ankles to keep them from moving.  I had hardware put in, I had hardware taken out. For each fusion, I spent weeks in the hospital and months in wheelchairs and crutches.

But, once this series of surgeries healed, the pain was still there.  Not as bad, but still present.  It hurt to walk. It hurt to stand.  I couldn’t exercise.  I couldn’t dance.  I gained weight.  My doctor couldn’t figure out what else could be causing the pain.  I started seeing a top orthopedist at USC.  He determined that, in addition to the coalitions, I had tarsal tunnel syndrome.  (Similar to carpel tunnel, but in the feet, tarsal tunnel is a condition caused by repeated pressure in the foot/ankle that leads nerve damage.)  While its uncommon for it to appear bilaterally, it seemed like the most educated guess at the time and I was desperate for relief. We moved forward with surgery for both ankles.

When these operations didn’t resolve my pain, I was about 5 years into this journey.  I was tired and depressed.  Frustrated to be a medical mystery and fed up with debilitating surgeries that weren’t helping solve the problem.  I transferred to UFAI (University Foot and Ankle Institute), and started seeing a fantastic doctor there.  The trouble with moving to a new doctor after that many surgeries, is that they don’t really even know where to start.  You’re not a clean slate and they weren’t around for the original diagnosis or operations.  They have to trust that you had the best care and treatment, but they definitely get the short end of the stick.  He determined that the previous surgeries left me tight and immobile through my Achilles tendons and calves.  While it wouldn’t be a guaranteed fix, he thought that by releasing tension and lengthening my calves, I could use my remaining ankle joints more easily, resulting in less pain in the overworked areas.  So I had my calves cut horizontally away from my Achilles tendons, and sewn back together with space between so that the muscle could rebuild and lengthen.

This helped a bit, but still not a full recovery back to my former self.  By this point, I had permanent disabled parking and developed a wrist problem (requiring surgery!) from spending so many months on crutches.  I applied to be seen at The Mayo Clinic.  After weeks of submitting essays and medical records, they granted me a one-week diagnostic stay at their Arizona campus.  Their specialists couldn’t figure out what was causing my pain.  I heard about a pain management specialist at Brigham and Women’s in Boston, who was known for thinking outside the box and diagnosing/treating chronic pain issues that other doctors hadn’t been able to identify.  I reached out to him via email:

I’m wondering if you think you might be able to help me.  I’m a 26 year old female and I’ve had horrible, life-altering foot pain (bilaterally) for about 6 years.  I’ve had 9 surgeries including subtalar fusions, tarsal tunnel release and gastrocnemius recession.  None of these procedures have helped.  I’ve had x-rays, CT scans, and MRIs, and none of them show any conclusive source of my pain.  I can stand for about 5-10 minutes before pain gets bad and i can walk for about 20 minutes.  When I’m non weight bearing, I’m at about a 1-2 for pain.  with long standing or walking, that can easily shoot up to  the 7-8 range.  I’m happy to come see you if you think you might be able to help.  I live in California.  I don’t know who else to go to, and I’ve heard you can work miracles.

He responded that he’d be happy to see me, and we started conversing over the next couple months as I planned a trip to Boston and he started planning a course of action.  While I was there, he decided on an x-ray guided procedure to neutralize and numb the nerves in each ankle.  While it wouldn’t be a permanent solution, if it worked, I could see 6-9 months without pain.

The procedures were horrifically painful (they can’t numb you since you have to be working with the surgical team to determine when they’re at the correct nerves) and there wasn’t any immediate relief.  But a few days after I got home, I was at the grocery store, in a long line.  After I finished checking out, I realized that I stood the whole time in that line (maybe 10-15 minutes) without any pain.  I walked to my car, got in, and ugly-cried.  It was the first time in almost 8 years that I had done a normal activity pain free.

Fast forward to 2018.  My feet still suck, but they’re not as bad as they used to be.  I opted not to get another x-ray guided procedure, even though it had been so successful.  That doctor was one of the only ones in the country performing it at that time, and it was incredibly painful and expensive to maintain.  But I had seen the light.  I’ve learned to manage my pain.  I know how much I can walk, how long I can stand, and how to safely modify exercises.  I’ve learned that every excess pound I weigh can feel like 8 pounds on my ankles, so I try to monitor my weight.  Although I was told I’d never run or jump again, I’ve slowly started incorporating stronger, more challenging movements into my workouts.  I can jog, I can do jumping jacks, I can hike.  I still think about my feet every day, and I’m not ashamed to whip out the blue placard on days when my feet have simply had enough.  But I’m living my life, and I’m not a slave to my feet anymore.  I may never know the  full extent of why my feet cause me so many problems, but at this point, my only options are experimental surgeries, and that’s a road I’d rather not go down.  I may need additional interventions in the future, but, for now, I’m going to keep moving forward, until I can’t any longer.

jen.