Miles4Hips Champion: Rebekah

Hi! My name is Rebekah Simon-Wainick, and I am from New Jersey.

My hip dysplasia story started when I was born although it, unfortunately, went undiagnosed for the first 14 years of my life. I was born about four weeks prematurely and was diagnosed with low muscle tone in my first year of life after having difficulties meeting a few critical milestones like holding my head and neck up, sitting up unassisted, pulling myself to stand, and walking independently. At my one year checkup with my pediatrician, he suggested to my parents that I start physical therapy at 18 months if I was not walking yet. My parents called the physical therapist the very next day! My pediatrician even told my parents that not every kid can be valedictorian and the athlete of the year. They should be proud that I was talking in complete sentences at nine months and reading chapter books early in my years. He told them not to worry too much about my lack of walking, as research states most children are either early walkers or early talkers but not both. 

My ankle orthotics that I wore when I started walking

When I finally could walk at the age of 2, I had to wear tiny pink custom molded ankle orthopedic braces to prevent my feet and ankles from turning in. I participated in physical therapy for about two years. As I progressed throughout my childhood, I learned how to compensate for my lack of physicality. I had frequent bouts of pain in my lower back, knees, hips, etc., but every doctor my parents took me to told me it was just growing pains. My primary doctor suggested to my parents that due to my apparent clumsiness and lack of ability to run effectively, instead of the traditional sports, maybe we should look into Karate since it could benefit my core instability. He also said I might excel in an individual sport where a team didn’t depend on my strength, endurance, coordination, balance, and speed. He was right. I credit him to this day for recommending to me a sport that was right in my wheelhouse. 

I started Karate at seven years old and took to it immediately. My Master supported me beyond belief and helped me gain confidence, skill and find a love for a sport and myself that I would never have achieved without his intervention in my life. Despite my hip dysplasia, scoliosis, and other spine-related problems, I hold a second-degree Adult Black Belt in Hapkido, Korean martial art focusing on Self Defense. 

My current story starts with my experiencing extreme lower back pain to the point that I had to limit my participation in martial arts. A local NJ orthopedist diagnosed me with a herniated disc and a stress fracture in my lower lumbar spine. He recommended an intensive course of anti-inflammatory medications, painkillers, and a long bout of physical therapy. 

I could continue martial arts again when I was in physical therapy during the summer of the Covid shutdown. A couple of months later, during karate, I fell strangely, leading to my hip making a loud and painful pop noise. I was in tears, and it was hard to get off the ground. Because it is not in my nature to complain, I didn’t tell my parents; I just dealt with it and moved on. A few weeks later, my Mother noticed me limping and asked why I was doing that. I told her about the incident at karate, and my parents immediately took me back to the orthopedist who was treating my back. At that point, he sent me for a hip arthrogram (an MRI with dye injected into my hip joint under a guided x-ray). This extremely painful scan showed evidence of a torn hip labrum and other inflammatory issues. He said I needed bed rest, to stop going to school, and to have surgery imminently so as not to make matters worse. 

My parents immediately sought a second opinion from a surgeon in New York City at the Hospital for Special Surgery (HSS). That surgeon (Dr. Sink) diagnosed me with bilateral hip dysplasia & a labrum tear in both hips. He was knowledgeable, kind, and patient while he explained what this diagnosis meant and the potential course of treatments for it. We were so grateful to have landed in the office of a sincere, intelligent, non-alarmist physician. Since Dr. Sink is brilliant but conservative, he wanted to exhaust all non-surgical options before even discussing the surgical options. 

I tried another full year of physical therapy, another course of anti-inflammatory medications, a cortisone injection into the joint, and electrical stimulation therapy. None of these options helped. As time passed, I kept getting more and more frustrated as my quality of life was disintegrating before my eyes. I was no longer able to take my brand new puppy on a walk without needing to be picked up in a car about a half mile from my house, I couldn’t walk around a mall with my friends, and I could barely make it through a school day without coming home in severe pain, let alone excel at the sport that has fed my soul for the past eight years of my life. Certain questions were racing through my mind daily: When and how can I live a pain-free teenage life? Are the surgical options to alleviate this pain something I want to embark on? Will I be able to go to a huge college and walk to classes unassisted from any walking support? Am I ever going to be pain-free to do what I want to do in life? I knew that as much as I was reluctant to miss a chunk of my high school years due to surgery, it would hopefully help me live a pain-free life in the long run.  

Getting ready to head into surgery

I finally had my left periacetabular osteotomy (PAO) surgery with Dr. Sink at HSS and left hip arthroscopy with Dr. Ranawat on November 24th, 2021. I was in the operating room for 7 hours. In the recovery room, my surgeon stopped my epidural to tickle the bottom of my operative foot to ensure that there was still feeling, which, thank goodness, there was. I was in the hospital for over a week due to multiple setbacks.

Screws holding my bone in place until it heals
Right after surgery

Most of my time in the hospital was a blur, but my Mother tried to make each day bearable. I spent the Thanksgiving holiday throwing up for 24 hours with my Mom by my side, holding a bedpan under my chin. My Father was not allowed to see me during my hospital stay due to the Covid restrictions. We watched some Netflix and cheered for my Mom’s college football team during the big ten championship game, Go Blue! University of Michigan! I listened to A LOT of Harry Styles and Taylor Swift to help ease the pain and emotional distress I was experiencing.

During my hospital stay, I also spent some time on Instagram messaging with other PAO patients to try and find the support I needed from someone who personally understood the pain and helplessness I felt being immobile, not being able to feel, let alone move my operative leg and the fear and anxiety that goes hand in hand with that.  While messaging other teenage PAO patients, I met and became best friends with another hip dysplasia warrior, Erin. She was and continues to be a such tremendous support and fed me so much good advice. Erin helped me get through the most isolating experience of my life. In April of 2022, together, we decided to create our joint Instagram account, @positive.pao, to help spread awareness about hip dysplasia, and show others that even though this experience is so difficult, there are so many positive aspects, like the people you meet, and the lessons you learn along the way. Click here to meet Erin and read her story!

I am now exactly ten months post-op & I am still experiencing daily pain, but it is a different kind of pain than before my surgery, and my operative hip and surrounding muscles are becoming stronger. However, I am still experiencing significant lower back pain because the discs between my spinal L4 and L5 are sinking into each other. The treatment for that is more injections into the discs, pain medication, and strengthening. Two years ago, I mentally decided to make it through this journey without using oral pain medications. I have been pushing myself at physical therapy to get stronger in my core and hoping that the benefit of that outweighs the daily pain it causes.

It has been an extremely challenging journey to get me to where I am now, but I am proud of the bravery, strength, and resilience I have shown to get to this point. I am gearing up for my right PAO and hip arthroscopy with the same incredible team of doctors at HSS on November 9th, 2022 (2 weeks shy of my first PAO). Although my junior year of high school is going to be spent focused on another major surgery, instead of prepping for college entrance exams, football games, formal dances, college visits, and the fun of high school, I intend to experience this journey just the way I have lived the past 16 years (and more importantly the past year of my life), with a smile on my face and a positive outlook as I genuinely believe that attitude impacts the outcome. I am blessed to have an incredible support system with my parents, grandparents, cousins, aunts, physical therapists, doctors as HSS, fellow hip warriors, and most recently, the team at Miles4Hips and the supporters of the International Hip Dysplasia Institute (IHDI) in my corner, rooting me on as I face the next step in this arduous journey. 

I support the International Hip Dysplasia Institute because of all their work to help families and everyday people who are diagnosed with hip dysplasia and on the same challenging journey as myself. Their use of professional resources, news articles, a list of products to make life more manageable, and a network of vetted and trusted physicians for those diagnosed and struggling with hip dysplasia truly helped me so much this past year. As I struggle through the daily pain and the treatment process of this diagnosis, it has been crucial for me to connect with an organization that is committed to spreading awareness, education, and support for its members. 

The patient stories on their website provide so much insight into what living with this disorder is like through patients’ eyes instead of a doctor’s perspective. This aspect of the IHDI is imperative because it allows patients to feel seen and realize that they are not alone. 

I am so grateful for the way that the IHDI helped me personally that I decided to launch my fundraising campaign with their assistance to raise the money that this organization desperately needs. My fundraising efforts will hopefully help the IHDI expand to keep helping more hip dysplasia patients, whether it be those recently diagnosed, those in the throws of the surgical process, or those experiencing a life of chronic pain. I am truly blessed to be partnered with the IHDI and Miles4Hips organizations. I feel it is my responsibility and duty to pay it forward and help other patients that are struggling like myself.