When I tell people that I have had multiple surgeries for hip dysplasia I usually get one of the following responses:
“Hip dysplasia? Like dogs get?”
“Is that from all of your running?”
The dog comment has helped earn me sympathy from dog lovers. It even helped me get through my pre-surgery insurance authorization process once. Upon hearing my diagnosis, the woman from my insurance company went on to tell me about her family’s beloved dog with hip dysplasia, Sunshine, who they decided to keep and love in spite of being told that it would be better to euthanize her. Apparently Sunshine lived a long and wonderful life and the woman assured me I would too! (And then she pre-approved my PAO!)
The running comment is definitely a more sensitive one for me. Partly because I am a biased runner who struggles to see beyond the positive attributes of my sport. But also partly because it makes me feel irresponsible for my body and my health. I am willing to accept that running MAY have accelerated my symptoms (I also have a theory about how my running have been protective but I’ll save that for another time). But no – running did not CAUSE my dysplasia. Upon my initial diagnosis my mom once remarked “You know this is probably because of all of your running,” and I shot back “No, this is because your uterus was too cramped!” Neither of us was exclusively right or wrong, but we left it at that.
Many adult hip dysplasia patients who I have talked to have expressed a similar combination of amusement and frustration with the lack of awareness and understanding about hip dysplasia. I’m hoping this post can shed some light.
What is hip dysplasia?
Developmental dysplasia of the hip (DDH) is the most common congenital (meaning it is present at birth) birth abnormality. As many as 10-15% of infants may have early signs of hip instability and as many as 1/100 require treatment. The joint is composed of the head of the femur/thigh bone (“ball”) and the acetabulum (“socket”). In hip dysplasia the “ball and socket” joint is often characterized by a relatively shallow and abnormally-shaped socket that doesn’t fully cover the ball. This causes uneven wear on the joint over time. Left untreated, hip dysplasia is a leading cause of pain, disability, early hip arthritis, and hip joint replacements in people under the age of 50.
What are the risk factors for hip dysplasia?
The cause of hip dysplasia is not yet fully understood, but the greatest risk factors include:
- First born
- Breech positioning
- Family history
All babies are screened by their pediatricians during well-baby checks, but these screening assessments may result in false negatives, meaning they don’t always pick up on hip dysplasia even if it is present. Although there is some debate about this in the hip dysplasia world, often only babies with positive hip screens or with risk factors such as breech presentation or strong family history have more formal testing using ultrasound or X-ray. (As a first-born female who had been breech for a good part of the third trimester, I wonder if I would have undergone more aggressive screening if I had been born recently instead of the early 80s). There is debate about whether or not all infants should undergo more thorough testing using ultrasound, but there are cost, availability, and skill-related limitations and there is some concern about over-diagnosing and over-treating hips that are immature and not definitively dysplastic.
How is pediatric hip dysplasia treated?
Hip dysplasia in a newborn may present as an unstable hip, a partial dislocated or “subluxed” hip, or may present as a fully dislocated hip. Bracing the hip to support the femoral head in the acetabulum and can be an effective treatment to promote normal hip development when infants are treated before the age of 4 months. Infants and children who do not respond to brace treatment or who are diagnosed too late for bracing often require more aggressive management. This may involve relocation of the hip and casting under anesthesia or surgical muscle and bone cuts to the pelvis and thigh to reorient the joint.
How is adult hip dysplasia treated?
Unfortunately, many people like me have hip dysplasia that is not diagnosed in infancy or early childhood. Symptoms such as pain, limping, and difficulty participating in sports-, household-, and work-related activities may start in adolescents or adulthood. Since the hip joint never formed completely, the acetabulum is often shallow and doesn’t fully cover the head of the femur. Over decades this overload can cause painful tears to the liner of the hip joint (the labrum), can cause arthritic changes at the bone, and puts extra stresses on the ligaments and muscles around the joint. There is currently some research being done to look at non-operative and minimally-invasive surgeries to address some of the symptoms of hip dysplasia, but many people require aggressive surgeries to decrease stresses on the joint.
People like me who are diagnosed in their teenage or earlier adult years and who have a relatively healthy joint without significant arthritic changes may be candidates for joint preservation surgery. This often involves cutting the pelvis and/or femur bones and reorienting them to improve how forces are distributed through the joint. The surgery that I had on both of my hips is the most commonly-performed hip preservation surgery and is called a periacetabular osteotomy, or “PAO.” This surgery involves bone cuts (osteotomies) around (peri) the acetabulum (pelvic socket) to move the position of the acetabulum to better cover the head of the femur. Screws are placed to hold the new alignment while bone healing occurs over the next 6-12 months. PAOs often require 6-12 weeks of limited weight bearing on crutches or a walker, and the rehabilitation process can be up to 6-12 months (or longer!) depending on healing and therapy goals.
For adult patients who already have more than mild hip arthritis when they are diagnosed, a total hip replacement surgery is often recommended. Total hip replacements can provide improved pain and function, but also come at a cost. Technology is improving and total hip replacements are tolerating more activity and lasting longer, but the materials used for the joint components are not as good as the natural joint and can loosen or break down over time. Although revision surgery can be performed, this is usually not recommended more than once in a lifetime, and activity limitations are often recommended to prevent early damage to the joint.
What is the long-term prognosis for hip dysplasia?
For an adult hip dysplasia patient, I have been relatively fortunate in my hip dysplasia journey. I received a correct diagnosis shortly after my symptoms started, had access to a team of experienced hip preservation surgeons to address my joint, had an uncomplicated surgery and recovery period, and have been able to successfully return to my physically active work, daily household activities, and my long-distance running. Some patients seek many medical opinions and receive inaccurate diagnoses over the course of years before getting properly diagnosed. While many patients can return to pain-free daily activities and even to some sports activities, many others continue to struggle with ongoing pain, disability, and complications from hip dysplasia, related surgeries, co-morbidities such as connective tissue disorders, and decades of muscle and movement compensations.
My body since my hip dysplasia diagnosis and surgeries…
Overall my hips feel pretty darn good! I didn’t realize how much daily discomfort and instability I lived with until 6-12 months after my first PAO. How amazing it was to realize what a well-aligned hip was supposed to feel like!!! About four months after my second PAO I flew down to Texas for a conference and it was probably the first time in years that I was truly about to sit comfortably for an extended period of time – I literally wanted to go around and high-five everyone on the plane!!! Life since my PAOs have been filled with that daily liberation of being able to do simple tasks without symptoms!
In spite of the good, however, similar to other adult hip dysplasia patients I know, I do struggle with various degrees of ongoing pain, stiffness, and generalized discomfort – especially up the chain into my spine and sacroiliac joints (where the spine meets the pelvis). This is likely due to a combination of mild generalized joint/ligament laxity, ongoing muscle imbalances, early arthritic changes, and abnormal movements associated with decades of functioning on uneven dysplastic joints. Although my hips are better-aligned to distribute forces through my joint and feel more stable, my hips will never be normal. Since my hips did not have the chance to mold properly when I was a young infant, I will always have dysplasia (basically a name for abnormal shape/structure) in my hip joints. Even with better alignment, my hips will never absorb shocks the way a “normal” hip would. Regular core and hip/pelvic strength and stability training are now a necessary part of my life. When I slack on these even for a week, I pay for it!
Although my hips do feel great the majority of the time, I also admit that I do live with degrees of fear and anxiety about my hips. My hips tolerate an awful lot, but I don’t think that they will last forever. I don’t know just how long they will last and what they can or should tolerate, and the occasional tweaks put me on edge. But I strive to listen to my body, to respect its cues, and, above all else, to enjoy and appreciate how relatively good and strong my hips feel the vast majority of the time. The idea of a total hip replacement used to terrify me, but now I have come to accept it as something that I will likely face at a relatively young age. I’ve heard many positive stories of younger people having hip replacements and the surgical techniques, technology, and materials keep improving; I am optimistic about the direction hip surgery is headed. I have told my surgeon several times that I want to be a good steward of my hip and the opportunities my surgeries have afforded me, but I also don’t want to let fear and anxiety about my hips control my life. As long as they feel good, I am going to enjoy them!