As a kid, I always knew there was something different about my legs. I remember, as a young elementary schooler lining, up with my class in the gym for a school assembly. The teachers would stand before the rows of students tell us all to sit ‘criss-cross applesauce’. Wanting to do what everyone else was doing, I’d copy my fellow students and try to fold my legs into a criss-cross position. Soon, I’d start squirming in my seat because sitting this way just never felt comfortable. It always caused severe discomfort. At home, I would frequently sit with my legs in a “W” position on the floor. I don’t recall sitting like this at school, though I’m sure I did. I vividly remember my mom telling me to not sit that way. As a preschooler my pigeon-toedness was not seeming to improve past the normal age for children. My mom took me to see an orthopedic specialist for advice. They told my mom not to worry about it; I would grow out of this and be just fine in a few years.
As I got a little older I always wondered why it was hard for me to run and keep up with my classmates. I vividly remember being very clumsy and tripping over my feet and just noticing that I walked differently than my peers. I simply couldn’t move the same way. My range of motion always felt limited and restricted. Overtime I think I began to subconsciously try to walk as ‘normal’ as possible to avoid comments and unwanted attention. I sometimes feel like I was trying to make myself as small and unnoticeable as possible. It made me very self-conscious and also very shy.
In my early teens I started to have more noticeable knee and foot pain. If I wore certain shoes, my feet and hips and knees would be aching after a couple hours. At this point I started to get some clues that something might be structurally not normal. I remember seeing my family doctor and explaining my symptoms and my mom had me walk down the hall so that my doctor could watch my gait. He almost immediately said he suspected I had hip dysplasia and sent me for an X-ray and said I may need surgery. I remember at that time doing some Googling about hip dysplasia. However, my doctor called with my X-ray results and said my hips were normal and recommended I go to physical therapy so the thought went out of my mind. I began doing PT two or three times a week in the afternoon after school. The plan was to try and change how I walk and teach me exercises to build up my hip muscles. I also was fitted for custom orthotic insoles. I remember expressing frustration when the exercises felt painful but I wasn’t very good at advocating for myself, and was told I just needed to keep doing my exercises and things would improve. Thankfully, the orthotics did make some improvements with the the pain I was experiencing, and things did get a bit better.
Sometime in the summer of 2021 I started to work on losing some weight. I started walking daily around 2-3 miles a day, and I was successfully losing weight. I was enjoying my daily routine where I could put on a podcast or audiobook and just have ‘me time’. In the Fall I started to decide to incorporate running with my elliptical machine. Sometime around then, I started to get a sharp pain in the front of my left hip. It was especially apparent when running, but it started to bother me when walking, too. I had experienced this before off and on and chalked it up to overuse or hip flexor tendinitis. I would back off from the activity and the pain would subside.
But then, a few months later, the pain returned without any significant increase in my activity level. It began to be a nagging daily pain. I’d try stretching, I’d try icing–which did help some. But the pain began to bother me at night and made it hard to sleep. A couple weeks later I began to get the same pain in the same area in my right hip. I had already been thinking about seeing an orthopedic surgeon at this point. My left hip pain wasn’t really improving or going away. I had done some preliminary internet searching to see what possibly could be causing it. I came across videos and articles about FAI (Femoral Acetabular Impingement) and wondered if perhaps that was the cause. I was able to find an orthopedic surgeon through the network my PCP was in and called and made an appointment for a few weeks out.
In the meantime I kept reading about FAI and other hip conditions. I began to wonder if there was a correlation between FAI and pigeon-toed legs. I never knew there was a proper term for ‘pigeon toes,’ and I stumbled across the term femoral anteversion. Immediately, a light bulb went off. It explained so much about me. With this new information, I went to my appointment with the orthopedic surgeon. I explained my whole history of walking in-toed and leading up to the recent pain I was experiencing. I didn’t mention any possible diagnoses; I wanted him to form his own conclusions. He patiently listened to me and then did some range of motion tests and pretty quickly concluded that I had anteverted femurs. I admitted that I had wondered if that were possibly true and that I’d done a bit of research. It was pretty validating to have a name to call my condition, and a small part of me was proud that I’d figured it out on my own.
The surgeon told me that he did not have expertise to treat me surgically. He recommended I try physical therapy (PT) as a first step but, if that didn’t help, to see a hip preservation specialist he knew from medical school. I expressed some hesitation about PT because I had gone to PT before and it hadn’t been very helpful. I was also afraid that the PT assistants might try to force my legs to do things they can’t do. He reassured me that he had a good person to send me to who would be knowledgeable enough to help.
I was relieved to have answers, but slightly frustrated to be sent to PT again. But I did as requested and called a local PT office the surgeon recommended and began PT twice a week. After just one or two sessions I began to experience excruciating pelvis pain that I had never had before. It was so bad that I remember being nearly in tears that weekend, and sitting with ice on me all day. Additionally, my lower back/SI joint started to become very agitated. I brought this up in my PT sessions and we had to shift gears. They noted that it looked like one hip was higher than the other. They worked on trying to get my back flat on the table and gave me additional exercises to try. PT began to feel pretty frustrating. I would see mostly the same two people: the owner and one of the assistants. It always felt like we had to start over from the beginning, especially if it was someone who hadn’t worked with me before. Often, I was told to do an exercise one way, only to be corrected the next session by someone else and told to do it differently. More importantly, the pain didn’t really go away in either my back or hips. It did seem to help a bit at first, but slowly it began to creep back up.
When I had about a month of PT left, I made a call to make an appointment with the hip preservation specialist my first orthopedic surgeon recommended. They set me up with his physician assistant (PA), and I reluctantly agreed. Unfortunately, this turned out to be a pretty negative experience, but it ended up pointing me to the right care in the end. I had to strongly advocate to the PA that I was not there to just be told to get a hip replacement. Especially after I had been explicitly told to see this hip preservation surgeon to avoid that very thing.
After I pushed back a bit, he went and called the surgeon and had him look at my x-ray over the phone. The PA returned and gave me the surgeon’s notes with a recommendation to see Dr. Mayo at Swedish. Despite the surgeon’s indication that I should see Dr. Mayo, the PA frustrated me by continuing to push the suggestion of a THR, saying that the preservation approach might not work, I might end up with more surgery later, etc. While all that is true, and I know there’s no guarantees, it was pretty frustrating that this was his solution to my problems. There was obviously a reason the surgeon I was referred to wanted me to be seen by someone who was more specialized.
A couple weeks after being seen at this office, I called to inquire about seeing Dr. Mayo. I was asked to have my information and imaging sent over and that he would review my case. Then, if I was approved, we could schedule an appointment. After two weeks of waiting, I heard from the office and was approved for a visit. Unfortunately, he was not available until the end of July but I took the first appointment I could get. By this point it was end of May or early June, so I only had about six weeks to wait. To be quite honest, as the next few weeks went on, things were pretty bad. I was in pain nearly everyday and felt like it greatly limited my daily life. I tried to push on as best I could, but there were days I just wanted to cry either out of frustration or because of pain.
Finally, my appointment with Dr. Mayo came. It was a long two hour appointment where he very thoroughly examined and listened to me. It was liberating to talk to someone who truly understood my anatomy. We did new x-rays and discussed surgery briefly, knowing that it was likely going to be the end result once we had more imaging. He sent me for an MRI and a CT scan to get the additional information we needed. We had a follow up visit after that and he looked at my imaging with me and gave me new information. Not only were all of the initial findings true, but I also had a small leg length discrepancy, and he was the first to note that the angle from the ball of my hip to my femur is too steep (valgus) . Thankfully the dysplasia I have in that same hip is mild and he didn’t think we needed to do anything to my pelvis.
He also measured the distance between the top of my hip and my knee using my CT scan, and was able to tell me how bad my internal rotation is. I have over 50 degrees of internal rotation in each of my legs. He recommended I get corrective surgery. After a week or two, when I didn’t hear from scheduling, I called them and they were able to give me a general idea of when I’d probably get surgery. They said it was likely to be late February due to Dr. Mayo’s schedule and him not being in the OR more than once or twice a week. Most unfortunately, about a month and a half later, I found out that the Hip and Pelvis Center was closing effective January 2023. I called the office to ask questions and was told they would be reopening sometime in 2023.
Over the following months I called them several times to get any possible updates, and I was told again and again that they had no information and the plan was still to reopen. As December came and went and January began to creep up, I began to lose hope. This was probably one of the lowest points in this journey so far. I had come so far to finally get the right care only for it all to fall apart and be left with no care at all. I held out hope until around the middle of February which was when the office officially closed. Then I began to look for any possible leads in my area for new care.
Thankfully I found some options after a lot of Googling and reading biographies about physicians. That said, it was pretty frustrating to have to start all over again, and part of me was really afraid that an appointment with a new provider wouldn’t go well. With some trepidation, I went ahead and scheduled with a hip preservation specialist who also worked though Swedish, as well as another surgeon in the Tacoma area. Leading up to the first appointment I kept wondering what I would do if neither of them could help. I think after having my care disappear it left me with a lot of uncertainty and anxiety. I worried, too, that I would show up at the appointment and they would tell me they couldn’t help me and there was nothing they could do.
The first appointment went better than I expected. Dr. Downer’s approach is very cautious, as it should be when considering surgery. He sent me for another MRI because the first one I had did not have contrast. He wanted to be sure there was no significant cartilage damage before we plan any kind of surgery. During this visit he had also mentioned that he was a little concerned about my weight. That gave me a indication that I should probably start working on trying to lose some, so I began immediately after that visit to work on that. This ended up being a very good decision.
I had a follow up appointment two weeks after my MRI and I was very anxious about it. I nearly had a panic attack waiting in the exam room. He said he would be able to preserve my hip, and I nearly broke down in tears and felt a rush of relief. His only concern with moving forward was my weight being a bit higher than he’d like. But he said if I could lose some weight, surgery would be a real possibility. Thankfully, in the back of my mind, I had expected this and was working towards losing weight. He was very clear that we were going to be on this journey for a while and that my right hip was going to need surgery as well.
I left the office feeling a mixture of relief and being overwhelmed. I broke down in tears driving home because, for the first time in months, there was some shred of hope and an end goal in sight. At the same time I was feeling a huge amount of anxiety and maybe even some disbelief. After having nothing happen for months and months, it was overwhelming to have everything happen so quickly. I am still struggling with these feelings. Until I have an actual surgery date I am struggling to wrap my head around the idea that there finally is going to be a resolution ahead. It has been a huge motivation for me to continue working on losing weight.
In some ways it feels like I am at the beginning of a long journey ahead. It’s been such a hard year both physically and mentally. However, I have also learned so much about myself and overcame a lot. I have learned to be better at speaking up and advocating for myself. It has been a huge help to find organizations and support groups for people who are going through this and really understand. As of now, I have lost almost fifteen pounds and the reality that surgery might be possible soon has started to settle in more. I have made an appointment to see my surgeon in a few weeks in hopes that we can start the next steps. For now, this will be a ‘to be continued,’ but I am hopeful that I can revise and update this story next year during Hip Dysplasia Awareness Month with updates about surgery and post-op.
Thank you for enjoying the hip dysplasia stories. The stories shared by our community members are intended for information and entertainment only. We are incredibly grateful to our hip dysplasia community members who have taken the time to share their experiences and journeys through hip dysplasia. These stories reflect individual experiences and journeys. Nothing in these stories is intended as medical advice and should not be relied upon as a substitute for consultations with qualified health professionals who are familiar with your individual medical needs. Miles4Hips does not endorse specific healthcare providers or institutions, and information or opinions shared in these stories does not necessarily reflect those of Miles4Hips or the International Hip Dysplasia Institute.