Sydney Steinberg's story
Hello, my name is Sydney Steinberg. I am a high school student in suburban NJ and my afterschool activities included dancing at a local dance studio on a competitive team and on my high school's varsity dance team. I was diagnosed with hip dysplasia at 15 years old and it turned my world upside down. So much so that I felt compelled to share my story and hopefully create a platform for all of us to share our journeys.
In late January of 2020, I was in a car accident on my way to school. The side airbags pushed against my hip, yet the doctors told me that I just needed some physical therapy. For months afterward, I remained in pain and had several X rays and MRIs taken, but nothing was found. I saw many doctors, from sports medicine physicians to orthopedists, but none were able to pinpoint the source of my pain. I put my heart and soul into endless hours of physical therapy for 6 months to no avail. I even traveled from my home in suburban New Jersey to New York City to see pain management specialists who gave me two steroid injections that proved useless. They suggested PRP injections but at that point, we decided that enough was enough.
We decided to go to the Hospital for Special Surgery instead. We met with the Chief of Physiatry who finally believed me and confirmed that I was not fine. They needed more imaging first. It was frustrating because every day that went by, the pain got worse. I was limping around my home and barely sleeping. After more imaging, they held a hip conference with several surgeons to discuss what is next. They requested me to take a diagnostic injection to confirm their diagnosis.
I went into that appointment not realizing how life-altering it would be. I was diagnosed with hip dysplasia. Although the accident did not cause hip dysplasia, it triggered the pain. At that point, I was already on crutches because I could not walk without pain. The doctor told me about the surgery to fix this condition but I did not know what the future looked like. I went from nothing to something that required a major surgery in the matter of a day. I was shocked, to say the least. The closest appointment I could get with the surgeon, Dr. Sink, was September 17. This was only three weeks out but it felt like a lifetime. School was starting in a few days and I just wanted to be fixed already. If only it was that easy…
Before we met with Dr. Sink, we met with a few other hip surgeons for more opinions and they all suggested the same thing. It was heartbreaking to hear. My family and I spent days laying out the pros and cons but we knew it was the only thing to do to get me better. A week before I even met with Dr. Sink, the surgery coordinator called and gave us a surgery date of September 29. We had not even met with the surgeon yet and it was all happening so fast. When we met with Dr. Sink on September 17, he knew everything about me already from the hip conference. He explained the risks, the purpose, and the timeline of the required periacetabular osteotomy, or PAO. The surgery was only 12 days away.
Those 12 days gave me barely enough time to prepare for what lied ahead. I had not even thought about the recovery yet because up until then I was led to believe that the previous 8 months were the recovery. After my pre-op visit, getting a lot of information at once, and balancing school at the same time, it seemed to be a lot to take in mentally. But the thought of a pain-free hip in a few months kept me going. On September 29, Dr. Sink performed my periacetabular osteotomy. I was finally on the road to a true recovery. I felt relieved but it was way worse than I expected. I had a very bad reaction to the anesthesia and pain medicines that made me very sick. After 5 long days in the hospital, I was discharged. Those days in the hospital were probably the hardest days of my life but I got through them.
I am 13 weeks post-op today. I have battled through so much in the last year but it has taught me how strong I truly am. I am a PAO warrior. The last 3 months have been a nightmare, let alone the last year. I have endured a lot of physical pain and struggled mentally to stay positive when everything seemed to go in the wrong direction. But I kept my spirits up because I will not let one bad year define me. I could not even stand in the hospital without blacking out and here I am now. Although I am still using crutches and my recovery is taking longer than expected, I know I will get there. To make things even more challenging, I have kept myself in relative isolation due to the COVID-19 pandemic, just to make sure that it will not prevent or delay the physical therapy sessions. I have devoted myself to physical therapy because I know I will come out stronger and be better for it.
This whole journey, while far from over, has opened my eyes to so many things and I am proud of how much I overcame since the surgery. It started with a bad reaction to the strong medications and anesthesia but that was just the beginning. The lifestyle changes I had to make socially, emotionally, and physically. The loss of mobility in my leg was painful and frustrating and not something I was prepared for. It was awful but everyday it got better. Another half an inch off the ground made my day. I never thought in a million years that lifting my leg an inch off the ground would be the biggest deal for me.
I often wonder how different my life would be if none of this happened. It has definitely changed me. This whole experience has matured me into seeing a new perspective on life. I learned the world's view of invisible disabilities. I shouldn’t be ashamed of using the handicap parking spot when I just learned how to walk again as a 15 year old. Nor would I shame others for doing the same. But most importantly, I plan to study medicine and I now know the kind of doctor I would aspire to be. I wouldn’t give up just because nothing shows up on an image. I wouldn’t give patients false hope and promises I can’t keep. I would want my patients to trust me the way I trust the doctors at HSS.
So thank you to the people who stared at me when I just started walking again for using a handicap parking spot. Thank you to the people who told me it was no big deal when they had no idea what I was going through. Thank you to hip dysplasia for not defining my life, but helping to shape who I am. Thank you to my parents for believing me when every doctor said I was fine. Thank you to the doctors who have been there for me every step of the way. I have learned to find strength even when life wants to knock me down. In the end, this was all worth it because I am pain free now.
Someone once told me, "Be the person you needed during hard times." That quote hit close to home. One thing I have learned from this experience is that although most surgeries impact people physically, the mental part of it is another battle. Being that I was immobile for over a month, keeping busy helped distract me from reality and kept me positive. I wanted to make the holidays a little brighter for the kids in the hospital during this season. For that reason, I organized a toy drive for the Lerner’s Children Pavilion at HSS. Having gone through an orthopedic surgery myself, I understand how instrumental it is to keep your own spirits up during such a hard time. Helping others feel joy and happiness in such a difficult time is the only gift I can ask for. I hope to continue raising awareness of this condition including this website.
Here I am, writing my story 3 months after surgery without even walking on my own yet. I can’t wait for the day when I can walk normal again and perhaps even resume dancing. But I have hope from seeing all of the other amazing PAO warriors gain their normal life back. I have been lucky enough to find the most inspirational people who have shown me there is a rainbow at the end of the storm. I hope to inspire others to get through this no matter how hard it is because if you can get through this, you can get through almost anything!