The Three R’s of Hip Dysplasia - Part 1: Research [Patient's Story]
September 26, 2017
Click on the links below to read:
Part 2: Resurfacing Part 3: Recovery
To say I live an active life is an understatement.
by Nicole Mullins, PhD, ACSM EP-C, NSCA CSCS
I cannot remember a day in my life when I haven’t engaged in some sort of physical activity. I live to move, and move to live.
Aside from the exhilarating natural highs that movement can provide, it is impossible to overstate the good associated with regular physical activity. It can empower, entertain, challenge, reward, unite, and heal. I believe this so strongly that I became a professor of exercise science, to educate as many people as possible on the benefits and the necessity of moving every day.
It is a privilege to be able to move our bodies, one which we should honor often. Even when we face challenges to mobility, we can find ways to move, if we have the will. The past 18 months have tested my will, but I continue to fight for my privilege.
I grew up in a middle-class family, in a small town in Maine, where I spent more time outdoors than indoors. What I knew then was that playing outside was fun and free. What I know now is that vast amounts of outdoor play helped me build a repertoire of movement abilities, which have been strong assets ever since. When I did begin competing in sports, my true love for moving and some diverse movement skills, helped me do very well. In my life, I have competed in gymnastics, tennis, cross-country running, sprint triathlons, obstacle course racing, Brazilian jiu-jitsu, softball, bowling, and pistol shooting, and I have spent countless hours hiking, biking, running, swimming, resistance training, golfing, water skiing, kayaking, dancing… moving!
So… imagine when, at 44 years of age, I found myself in need of bilateral hip resurfacing.
A blow to the very core of my being
About 18 months ago, I began having some diffuse hip pain, which was nagging, but not intense enough to warrant medical attention. Then, during a jiu-jitsu training session, I elicited “intense enough.” I tore my acetabular labrum, the layer of cartilage that lines the socket of the hip joint. In the process of getting the damage assessed by a sports medicine physician, I learned that I had bilateral, congenital hip dysplasia.
Dysplasia is a condition in which the hip socket is shallower than normal and fails to fully encapsulate the head of the femur. The consequence is that, throughout life, the force of the body’s weight is transmitted over a smaller-than-normal surface area, which leads to premature cartilage wear, bone-on-bone contact, and joint degeneration. The physician could offer me no long-term treatment, only the temporary relief of a steroid injection.
My X-rays revealed dysplasia and my MRI showed extensive labral hypertrophy and multiple labral tears in both hips. My diagnosis and prognosis were devastatingly bleak.
The next nine months were extremely difficult, physically and mentally. With little recourse, I carried out all of the conservative care that I could (physical therapy, massotherapy, etc.) and worked very hard to restore function. As an exercise physiologist, I know a lot about physical training and rehabilitation, but despite all efforts, my pain and mobility only worsened. I continued to swim, lift, cycle, and row, but I could not walk, without a lot of pain and limping. My life was not my life. I was not me.
Finally accepting that I was not going to improve, I decided to see another respected arthroscopic surgeon recommended to me months earlier. The appointment, however, was brief, as he said that the “shredded” condition of my labra could not be fixed arthroscopically. He recommended hip resurfacing by one, and only one, surgeon in Ohio. I made the appointment.
In the interim, I continued to research and became increasingly convinced that I was awaiting what would be another fruitless consultation. Resurfacing requires special expertise among hip surgeons, even more so for patients with dysplasia, and even more so for small-framed females. Many surgeons exclusively use prosthetics that are ill-suited for the irregular shape of dysplastic hips and for people with small frames. Ultimately, I learned that neither the surgeon I was waiting to see, nor the other two dysplasia resurfacing surgeons in Ohio, were suited to my case.
Between May and January, I saw SEVEN healthcare providers within my insurance network. With each, I started over and got no relief.
FInally, a break
I continued to pour over the scholarly literature on hip dysplasia, hip resurfacing, surgical complications, prosthetics, metallosis, and all things related to my situation, to find a skilled provider and determine a fully-informed course of action. Among the 60+ scientific papers that I read, the publications of Dr. Thomas Gross and colleagues stood out. So, after my seventh and most disheartening in-network experience, I left a voicemail for Ms. Lee Webb, surgical assistant of Dr. Gross. She returned my call, within minutes, from her cell.
My conversation with Ms. Webb gave me an enormous sense of relief. First, she listened to me. Actually listened. Then, she clearly explained the process to secure treatment by Dr. Gross as an out-of-state patient. She answered all of my questions, clearly and fully.
When I later spoke with Dr. Gross himself, I experienced a second wave of reassuring relief. He communicated with me, not at me, and he exuded confidence, but not arrogance. By then, I only had a few questions, but he would have spoken with me for as long as I needed. I scheduled my surgeries immediately.
The wait for my university semester to end and my surgical dates to approach felt longer than any childhood countdown to Christmas. I gave exams on the Friday of finals week and flew from Ohio to Columbia on Sunday. My sister Michele met me in the Columbia Airport, traveling from her home in Worcester, MA.
My sister was incredible all week. I feel both blessed and indebted that she conquered her fear of flying and spent a week of her vacation time for me. That’s love for sure, to spend a week’s vacation in the hospital!
Michele and I checked into the Courtyard Marriott Columbia Northeast, which is literally next door to Providence Health Northeast. It is spectacularly convenient for someone supporting a surgical patient. On Monday morning, we left the hotel on foot at 5:45 am and arrived at Providence at 5:48 am, limp and all.
Despite my limp and the early hour, my Monday smile spanned from ear-to-ear, as my surgery day was finally here.
Dr. Nicole Mullins is a professor of exercise science, in the Department of Kinesiology & Sport Science (KSS), at Youngstown State University. She earned her Ph.D. and M.A. in exercise physiology from Kent State University, and her B.S. in exercise science from the University of New Hampshire, where she competed in gymnastics. She is certified by the American College of Sports Medicine (ACSM), as a Certified Exercise Physiologist (EP-C), and by the National Strength and Conditioning Association (NSCA), as a Certified Strength and Conditioning Specialist (CSCS). She is a lifetime competitive athlete and physical activity enthusiast, with a mission of educating as many people as possible on the essentiality of regular physical activity and sound nutrition for making the most out of life.