From Miserable Malalignment to Meaningful Movement

I knew something was different about the way my legs looked and felt for most of my life. I remember being self-conscious about the way I stood, and when I look back at pictures from prom or from school sports, I cringe when I see my knees facing each other. I cringe not only because it’s not aesthetically pleasing, but because I thought the pain I felt was “normal”.

I was always very active, since the moment I came out of the womb. My nickname as a child was “Thumper” because I was always moving my legs and thumping like a rabbit. I threw myself into all different kinds of sports as a kid, but the ones that stuck were running and tennis. I started playing tennis when I was 8 years old, continued through high school with success, and played in my spare time in college. I began running when I was 11 years old, on my middle school team and then on my own time in high school and college. My goal was to run a marathon, and I had been completing races (from 5Ks to half marathons) in preparation. I wasn’t going to give up on this goal, ever. But my body protested, and this goal wasn’t going to be easy to reach.

My hip pain became significant in 2017. I had been training for a half marathon, doing a lot of strength training, and had recently participated in a 16-mile pilgrimage in Costa Rica. My right hip had a pinching sensation with every step I took. I went to an orthopedist and was diagnosed with femoroacetabular impingement and labral tear in my right hip. I completed 3 months of physical therapy, and although I got stronger, I still had a lot of hip pain. In December of 2017, I had my first hip surgery to remove the impingement and fix the labrum.

With the guidance from my physical therapist, I had started to get back to running. I felt better for about 5 months, and then the pain returned. Therefore, I stopped running and returned to an orthopedist. After further imaging, I was diagnosed once again with femoroacetabular impingement and labral tear in both hips. The first surgery on the right hip had failed and had caused two impingements instead of the one I had originally. In July of 2019, I had the revision surgery on the right hip. In December of 2019, I had surgery to fix my left hip. I now had 3 hip surgeries under my belt. I was hopeful that since the impingements were gone and the tears were fixed, I would be able to start running again.

In December of 2020 I decided to give running another go. I had done everything I could think of to help my body ease into this kind of activity again, including more physical therapy, cross training, eating well, wearing the right shoes, sleeping better, eating the right foods, etc. I worked my way up to running 10 consecutive miles, three times a week. I thought I was on the right track, until my body screamed back at me, saying that something was still wrong.

By May of 2021, walking became exceptionally challenging, and I was unable to participate in the activities that bring meaning to my life. I had pain in my hips, knees, and ankles nearly all of the time. People would see me limping and would ask if I needed help. Once, while I was at the gym (diligently doing my PT exercises of course), someone asked if I needed an ambulance because of my poor gait. That was a wakeup call for me. I wasn’t aware that I looked so bad when I walked and wasn’t aware that I was ignoring the pain all along. My brain was just so overjoyed from running again that it wasn’t picking up on the fact that my legs were still in a lot of pain.

After bouncing around from doctor to doctor and not receiving answers, I reached out for some help online. Someone contacted me saying that they saw a picture of my legs, and it appeared to be representative of Miserable Malalignment Syndrome (MMS). I had never heard of that before, but in researching it, I realized that the definition fit me perfectly (abnormal rotation of the leg bones). My femurs were pointing inwards, while my tibias were pointing outwards, and it was causing a lot of stress on all of the joints in my legs. Getting this diagnosis from a doctor was not easy, and I really had to learn how to advocate for myself in order to improve my quality of life and to reach my goals. In August of 2021, I finally received MMS as a diagnosis.

When my surgeon first walked into the room, without me even saying anything, he knew that I had MMS. He told me that the way I sat in a chair gave it away. He had me stand up with my feet together, in which it was clear that my legs weren’t aligned. He had me walk and found that I had significant out-toeing. It was no wonder that running became impossible…the way my bones were angled, I essentially did not have the bones as support for my joints. 

The next phase of this journey was a right femoral osteotomy (FO) in October of 2021 and a right tibial osteotomy (TO) in June of 2022. The bones were broken and rotated to be straight, and then held together using a plate and screws. These surgeries were different from the ones I had experienced before; it involves a long, challenging recovery and rehabilitation process. I had to learn how to do my activities of daily living (ADLs) in a different way, which was actually fun for me because I am an occupational therapist (we teach people how to do their everyday activities, like getting dressed, bathing, grooming, or anything that is meaningful to you). As an OT, I teach my clients how to be an advocate for themselves, but when it came to advocating for myself, it was a whole different ballgame. I also had to learn how to keep myself well mentally. Every day following surgery, I envision myself running the trails, crossing the finish line of a race, playing tennis with a friend, hiking the trails I’ve fallen in love with, walking without a limp, or doing my ADLs with ease. I also envision myself continuing my work as an OT and using what I have learned through my own hip journey. I want to emphasize the importance of engaging in activities that bring you meaning and finding ways to make these things happen for people with all sorts of conditions.

I am still in the midst of this first leg of recovery. I will be having my last surgery on my right leg (a labral reconstruction) in December of 2023. I will also have femoral and tibial osteotomies on my left leg and hardware removals. I wanted to share my story because it was initially very difficult for me to find a story that was similar to mine. But as I have learned, there are many hip warriors out there to learn from. I also write this to hold myself accountable: I will never give up on my goal of running or doing other things that are meaningful to me, no matter how hard things get. I hope you won’t give up on your goals, too. Together, we will succeed!

Listen to an interview with Kait about her diagnosis and treatment on the Major Pain Podcast