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Road to Recovery: Hip Dysplasia, a Devastating Disease

As I try to put the last 14 months of my life into words, I find it much more difficult than I anticipated. I am overwhelmed by all the different thoughts and emotions I am experiencing as I write this. But, I want to share my story with the hope that I can help other girls struggling to overcome their diagnosis, while increasing awareness of hip dysplasia, a devastating disease.

Hip dysplasia is a developmental disease where the hip socket does not form properly. The bones in the hip joint are not aligned, causing abnormal wear and tear to the acetabulum and labrum within the hip joint. Hip dysplasia occurs mostly in females. At birth, each baby is screened for hip dysplasia by a series of physical tests. According to the Hip Dysplasia Institute, 4 out of every 1,000 babies have hip dysplasia, but only 10% of those hip dysplasia cases are detected at birth. Doctors are beginning to realize the ineffectiveness of the tests. Unfortunately, for those who are not diagnosed at birth, they typically begin experiencing symptoms in their early 20’s.

From a young age, I always loved being active. I played basketball for six years and in college, I ran and went to the gym about five days a week. I was always the athlete in the group, constantly asking my friends to go for a run with me or hit up an exercise class with me before dinner. However, my whole life changed in December of my freshman year. I began experiencing a lot of pain in my groin and hip area. I thought that rest would do the trick and I could get back to my active lifestyle within a couple days, but I was very wrong.

The pain persisted for 3 months and got increasingly worse. I finally stopped all of my activity and sought advice from an orthopedic doctor. After 6 months of seeing several doctors, multiple diagnoses, physical therapy and injections, I was told that I needed to see an orthopedic hip surgeon that had extensive experience with hip abnormalities. My mom and I began researching to find the best surgeon in the area.

Finally, in September of 2016, my sophomore year of college, I had the answer that I had been waiting to hear for so long. I went to see Dr. Srino Bharam in New York City. He called a couple days later and said that I had hip dysplasia, a fully torn labrum and needed surgery as soon as possible. For complex surgeries such as mine, he typically called Dr. Travis Matheney from Boston Children’s Hospital to do a two-part procedure. The first surgery would be arthroscopic to repair my labrum and the second, according to the book “Onward! Navigating Hip Dysplasia, PAO Surgery, and Beyond,” would be one of the most invasive and complex orthopedic surgeries called a Periacetabular Osteotomy.  I immediately scheduled my surgery for December 19th.

After my mom and I hung up the phone, the realization of what I was just told began to set in. The rush of emotions that I felt was indescribable and all I could do was cry. I felt relief, but also dread and fear for my future. I kept thinking; why me and why now? My whole life had changed in an instant and I did not know how to process it all.

I began by doing research and trying to understand my condition and surgery. A Periacetabular Osteotomy, a rather rare procedure, involves cutting the pelvic bone, shifting it so that the hip bone is correctly aligned and then screwing the bone in place. The recovery is about 6 to 12 months, requiring extensive physical therapy to relearn how to walk.

As I began to prepare myself for this life-altering event, I prayed each night pleading to God to end my pain and to not put me through such a difficult surgery and recovery. I cried every night and endured the pain every day. But slowly, I began to accept my diagnosis and my situation.

The date of my surgery was quickly approaching, and before I knew it, I was headed to New York City on December 19, 2016 to undergo major hip surgery. I did not sleep at all the night before and I laid awake fearing the worst. I was afraid that the surgery would not be successful, that I would need multiple surgeries to correct my hip and the worst thought of them all, that I would not be able to walk again. It was by far the longest night of my life.

As I sat in the pre-op room a couple hours later, I met with all my surgeons, resident doctors, and nurses. I tried to relax and focus on something positive, but nothing helped. After what felt like an eternity, I was wheeled into the operating room, hugging my parents tightly one more time before they left.

After five and a half hours, I awoke in the recovery room. I was unable to move and in excruciating pain. This was the beginning of my fight to get well and to overcome this enormous obstacle that God put before me.

For four days, I fought through the pain, the nausea, the muscle spasms and the nerve pain. I pushed myself in physical therapy, determined to get moving. However, I had no use of my operated leg. I needed help sitting up, getting out of bed, going to the bathroom and even using crutches. Going into surgery with the ability to walk and then waking up with a temporarily paralyzed leg is hard to grasp. I had muscle and nerve damage that could take weeks, months or even years to return. Accepting my new reality was tough. But I knew I was tougher.

After the hardest four days of my entire life, I passed physical therapy and was released from the hospital. I cried tears of joy when I received the OK to leave. I could spend Christmas with my family.

I could have never imagined what the next five weeks at home would be like for me. But each day, I endured the pain, discomfort and immense swelling. I struggled to get through each day, but I knew that I would get stronger and that better days were ahead.

At times, I became so frustrated with my new life. I needed help with everything, from getting dressed to standing up. I couldn’t sleep because of the nerve pain in my leg. I had constant sharp pain in my hip and pelvis making any position or chair uncomfortable. I would get surges of immense pain and all I could do was cry out and hope it would end soon.

After a difficult four weeks, I began improving. I started physical therapy and pushed myself to my limits. I wanted to improve so badly and the more I worked at it, the more I did. I began to see progress and my attitude began to change. I had two options, I could wallow in self-pity or I could wake up every single day and fight for my life back. I chose to fight.

Within 6 weeks, I returned back to college. And every day since, I endure the pain and I persevere. I put all my effort into my physical therapy sessions. I am getting better each day.

Today, at 10 weeks since my surgery, although I am still on crutches, I have improved immensely.

I am a different person. This experience has given me a new outlook on life. It has taught me so much about life and more importantly, myself. I learned to that it is okay to need and ask for help. I learned that I am strong. I learned to be patient because healing is a slow process. I learned to be persistent because there will be setbacks, but I must keep going. Above all else, I learned to be grateful because I will be okay.

I am grateful that the surgery was a success. I am grateful to have made it this far in my recovery. I am grateful that I soon will be able to walk pain free. I am grateful for my amazing family. I am grateful that I will have a normal life again.

Junior at the University of Scranton. Studying Human Resources and minoring in Business. Born and raised in New York.
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