Amanda Fuller: Periacetabular osteotomy and femoral osteotomy
I was glad to receive this submission from Amanda Fuller, a teenager whose young dance career was made impossible by the degree of hip dysplasia she was born with. Below you can read of her experiences with various hip preserving surgeries and her advice to other young dancers seeking help. -NR
Femoral osteotomy 1/04
Femoral osteotomy, 11/04
Periacetabular osteotomy and femoral osteotomy 7/06
Surgeons: Dr. David Helfet (HSS) 1/04, Dr. David Helfet and Dr. Buly (HSS) 11/04, Dr. Helfet, Dr. Buly and Dr. Jeffery Mast (Nevada) 7/06
Hospital: Hospital for Special Surgery (HSS), New York, NY for all three surgeries
Prior to surgery
I experienced hip pain and varied symptoms from birth. According to my mom, I stood with my left hip in flexion, like a stork, and wore a weighted booty to bring my leg down. My pediatrician could not rotate my legs properly, which I obviously don't remember, but I know that since I've been tying my shoes, I could not bring my left hip closer than 90 degrees to my chest. I've always tied my left shoe with my leg perfectly straight, which at least gave me a very flexible hamstring. I did ballet as a child, but gave up when the limited motion in my left hip became too much of a burden. One teacher pushed so hard on my leg trying to bring my knee closer to my chest, telling me I just needed to stretch it out.
In second grade, I went back to the doctor's office and ended up in traction for two months, but I was happy I went to Disney world in a wheelchair and got to skip all the lines. I saw multiple orthopedists when I was young, none of whom gave me a clear diagnosis. I don't remember much, but I know I didn't experience that much pain, and when I did, it was unpredictable. Besides the limited range of motion, it was not obvious that my left hip was the source of all my varied leg pain.
I would give anything to go back and analyze every stage of development, read all the doctors' notes and test results, and try to figure out why something wasn't done earlier. Some doctors said it wasn't classified as hip dysplasia and I might grow out of it. Others gave up on fixing it because I was too old for the non-surgical approaches typically used to correct hip dysplasia. One thought I had Juvenile Rheumatoid Arthritis. All I can say now is I was an unusual case, and even now, I'm not sure if that's true.
Xray shows Amanda's hip before any surgery.
I was sixteen when I went to Dr. Coleman of Hospital for Special Surgery (HSS). I had seen other pediatric orthopedists at HSS in the past without results, but came back after new symptoms appeared in high school. I started dancing again in a group at school and participated in many competitive sports. With a better understanding of my limitations, I was able to explain to coaches and instructors I simply couldn't do certain things. However, the increased activity brought on more and more pain, sending me back to the doctor once again. Dr. Coleman's specializes in arthroscopy, so he recommended me to Dr. Helfet for the major surgery.
Dr. Helfet did do a lot of work trying to figure out what to do: multiple tests, conferring with other specialists in HSS, and working with me. He ended up doing a femoral osteotomy to change the angle of the neck of the femur. After tons of pain and just four months walking without the crutches, I was back on them and in more pain than I was before the surgery. Dr. Helfet and Dr. Buly, also of HSS, did another femoral osteotomy less than a year later, externally rotating the femur. This surgery was much easier for me in terms of pain and I was doing pretty well a year later. Dr. Helfet, however, was not satisfied with the results and sent me out to Nevada to see Dr. Mast.
"Me on the Great Wall, six months after the second surgery, my leg started to hurt again after carrying around disabled children while volunteering at an orphanage in China"
Dr. Mast is by far the most amazing doctor I have seen. He spent three hours examining me, even holding my leg into different positions for x-rays while they were taken. He concluded I needed a pelvic osteotomy to truly fix the problem. My acetableum was covering too much of the front of my femoral head and I was experiencing knee pain from walking with my leg externally rotated. Dr. Mast flew out to New York for me to do the surgery and teach Dr. Helfet and Dr. Buly this procedure. They cut out and rotated the acetableum and rotated the femur back into position. I've been told there were over 30 people in the OR with me for an eight and a half hour surgery. I guess I am a weird case.
Now, I'm nineteen and that surgery was three months ago. I stayed in the hospital six nights (compared to five and four on the other two) and recovery was very painful. I'm still using one crutch, but I'm getting close to walking. I am still unable to bring my knee any closer to my chest than before, despite working intensively on it in physical therapy. I don't have any pain in my hip joint itself, unless it's being manipulated by my physical therapist, just varied muscle soreness and knee pain from starting to walk again.
After the first and second surgery, there was a point in physical therapy when I realized something was not entirely right. I realized there were new restrictions and I hadn't gotten rid of my old ones. Also, I just knew it didn't feel right. Dr. Helfet asked me last month if it felt like I had a new leg, if it felt completely different. At that point I didn't have an answer for him because it was too early, but now I know. It's the same. I still have the same hip I was born with, that I grew up with, despite many cuts and screws and plates in my bone. I hope they will prove me wrong in a few months, but from where I'm standing, this was all a waste of time, money and pain.
I may have been too young to fully comprehend what was going to happen to me. I actually welcomed the surgery as an answer to all the weird problems with my legs. Now I know it is important to deeply consider the benefits and the costs, the chances of full recovery and the chance of making it worse. If you are considering major surgery to fix minor osteoarthritis from hip dysplasia, make sure you are willing to risk the abilities you have now. If you can run and dance with minor pain that could be taken care of by Tylenol, you don't need to rush towards a femoral or pelvis osteotomy. If you're older and the pain it bad, some type of surgery might make sense, but if a doctor is threatening you with the idea of total hip replacement in ten or twenty years, an osteotomy may be too extreme. A pelvic osteotomy is not an exact science and is still being perfected. Please do the research, talk to many doctors, and weigh the decision carefully.
"Me with Tian Fang, an eight year old girl with cerebral palsy and partial blindness, when I think about her strength, it's hard to complain about my hip, ironically playing with her and carrying her around caused my hip to flare up again"
UPDATE! November 02, 2009
It has been three years since my PAO, and I'm happy to say that my frustration three months after surgery were short-sighted. My left hip is doing extremely well. A year after the PAO, the hardware in my femur was removed, although the pins in my pelvis are still there, as they haven't caused me any symptoms. Even my scar is slowly disappearing!
Unfortuately, I am still having issues with my other hip. While the dysplasia is much less dramatic, there are subtle problems with the mechanics of it that have caused repeated injury. I've undergone two arthoscopic surgeries in the past two years, which have each been minorly successful in keeping some symptoms away for around six month. My doctors are now talking about PAO to correct this if any degeneration in the tissues is found. At least this time I know what I'm in for! It's a long road, but well worth it. I had osteoarthritis when I was 16, and now my left hip should last as long as I can! I still have the same mechanical restrictions, but after three years of slow, steady recovery, I know that scar has been opened for the last time. Having won one battle, I'm ready to push through and win the war.
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