Hip Dysplasia…Yes, like a dog….Kind of….

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?”

or

“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:

  1. Female
  2. First born
  3. Breech positioning
  4. 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.

Pre-Op (top); After Right scope/PAO (bottom left), After left scope/PAO (bottom right). Notice how the pelvis socket has been cut and tilted to the side to improve the coverage of the head of the femur. The screws stayed in for about 6 months on both sides and were then removed through a minor surgery.

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!

Miles4Hips: What’s in a name?

When the concept of using my running to support the International Hip Dysplasia Institute (IHDI) came to my mind, I didn’t know the direction it would take.  My initial plan was to train and run this race and see if I could elicit some friends and families to support my cause.  But when people in the hip dysplasia community and at the IHDI shared my enthusiasm, my mind started wandering about the possibilities.

Early on the question came up from the team at IHDI: what are you going to call yourself?

I had no clue!

One of the team members proposed the name “PAO Runner.”  For a little while I thought it was going to stick, but it just wasn’t right.  There were a few reasons I had trouble latching on to it.  One was that I have struggled with the identity of being a “runner” since my hip dysplasia diagnosis, and I wasn’t sure I wanted the stress of a name I didn’t know that I could live up to.  Another reason was that I didn’t like the idea of being defined by my PAOs.  Although the experiences of hip dysplasia and PAO surgery have become a part of my identity, I don’t want them to BE my identity.  Finally, even early on, I didn’t want this initiative to be about me.  One of the greatest things to come out of these experiences for me has been the people I’ve met.  Hip dysplasia affects so many lives, from newborns through adults.  I’ve encountered parents of infants being treated with harnesses, casts, and surgeries, children who are undergoing orthopedic surgeries for correction of congenital and acquired hip dysplasias, and adolescents and adults who are managing hip dysplasia through various interventions including conservative management like physical therapy and activity modification and surgical procedures such as hip arthroscopies, various pelvic and femoral osteotomies, and total hip replacements.  And it is not just their lives that are affected, but also those of their partners, parents, siblings, children, and friends.  I wanted something that was about more than me running a race and that would, instead, relate to many others whose lives have been affected by hip dysplasia.

I sent a few possible names back to the team at IHDI and they chose Miles4Hips.  At first it just sounded good. But the more I’ve thought and reflected on it, the more I realize that it was a fateful choice, and I have an incredible appreciation for the vision it holds.

When I think about the “miles” I’ve accumulated for hips, I realized that they go far beyond my running miles. There were the miles I drove and flew to get multiple opinions when I was first diagnosed. There were miles I put in on with an electric scooter around Target a few days after surgery (anything to get out of the house!) There were the miles I crutched through city streets to get to follow-up appointments post-operatively and mental health/fresh air miles I crutched up and down the street by my house in the weeks following surgery. There were many driving miles to and from physical therapy. There were miles biked and miles swum. There were hundreds of hiking miles logged on trails with crutches and hiking poles. There were attempts at running even just a few 100 feet that ended in defeat. There was hope in the first mile run without pain.

 

Everyone I know who has been affected by hip dysplasia puts on many miles for their hips.  There are miles put on in cars, trains, planes, and buses – sometimes hours or days of travel- for consults and surgeries.  There are miles logged by parents and spouses and friends driving loved ones to physical therapy and medical appointments.  There are miles logged on strollers and crutches and walkers and wheelchairs.  There are recovery miles logged in the pool and on the treadmill and on bikes.  Some miles are practical, some are dreaded, some are painful, some are expensive, and some are positively liberating.

What are your Miles 4 Hips?

So why THIS race?

A scenic race on the Utah-Idaho border with feasibly-moderate elevation, spectacular mountain views, and promise of beautiful fall foliage (hopefully – two years ago the runners encountered a snow storm!) – that’s enough to get me to bite!

But an even better reason…I have a dear friend who is also an ultra-marathoner and who has also had surgeries for hip dysplasia.  We met through a PAO Facebook group and we are now life-long friends.  We had our first PAOs a few weeks apart in 2015 and talked frequently in the months leading up to our surgeries.  A picture of her husband crossing a stream in his running gear and the following message was the last thing I read right before going back to the operating room:

“One last inspirational pic.  This is Nate at mile 85 of The Bear 100.  You’ll be doing this in no time!”

Clearly, it’s a sign!

But isn’t running going to destroy your hips?

Maybe.

But maybe not.

This is an interesting debate and I have talked to many patients and surgeons who are polarized towards one side of the argument or the other.

Most of the long-term research out there does not find any relationship between long-distance running and increased risk of arthritis.  In fact, there is some interesting research out there that supports the opposite!  I truly believe that if you have good mechanics, good strength and stability, maintain a healthy weight, and follow good training principles then running can be a wonderful activity.

That said, people with hip dysplasia are not necessarily “healthy runners.”  While the healthy hip is a ball and (round) socket, the dysplastic hip is often a ball with a shallow, elongated socket due to how it develops in childhood. Even if you re-orient the bones to provide more coverage, there still is no true round ball and socket joint.  That mismatch in shape can still cause uneven cartilage loading and joint damage.  Surgery, itself, can increase the risk of arthritis since it is a (controlled) trauma to the joint.  Current research looking at ACL repairs is finding that many active/athletic patients are starting to develop early-onset arthritis within 1-2 decades of surgery. PAO surgeries are not nearly as common and haven’t been around long enough to track these outcomes in athletes.  Patients with hip dysplasia who undergo surgery are the future data points who are going to pave the way for clinical decision making around surgery and return-to-activity. It’s kind of exciting (from a dorky research perspective) and also frustrating for those of us trying to make these decisions now.

I think the best thing patients can do is be aware of the pros and cons and carefully weigh them when making a return to running decision. From a biomechanical standpoint, it makes sense that if a joint is at risk for early failure, then avoiding high-impact activities may be best for longevity. However, we don’t really know what happens to hips in active people over decades following hip preservation surgery because the research just isn’t there (fortunately, it’s starting to come!)   I am hoping that future research will be able to identify variables that can help predict outcomes for patients who want to run after surgery.  For example, variables such as age, cartilage health, pre-surgery activity level, pre/post-surgery pain, strength, range of motion, torsional deformities (excessive rotation) in the thigh and lower leg, flexibility/hypermobility, running mechanics, and predisposition to running injuries before surgery, as well as training variables such as footwear, terrain, and intensity of training could all contribute.

I have definitely made some modifications to my running and training since my diagnoses and surgeries.  I run mostly on trails since they keep me slower and force more natural walk breaks, are lower impact, and force fewer repetitive movements.  I have also come to accept that strength and stability training are going to have to be regular parts of my life if I want to be able to keep running.  I started working with a running coach a few months ago (he tells me he doesn’t let his runners get injured, and that certainly is the tag line I needed to hear!)  I have been focusing on strength and form and can already can tell than I am a stronger runner than I have ever been before!  I am not sure what my outcome will be, but until there’s a fancy clinical algorithm to plug all of my individual characteristics into to make these decisions, the best I can do is be smart, stay strong, focus on my mechanics, be safe, and just enjoy what feels good!

Why would I want to run 100 miles?

I always enjoy the responses of people (runners and non-runners, alike) when they hear about ultra-marathons.  Most people understand the lure of the half marathon and marathon distances.  When you tell someone that you are training for a half marathon or a marathon they are often impressed, and frequently share their own story or personal interest in attempting one of those distances.  But when you tell someone you are training for a 50K or a 50 miler or longer, the responses are often less enthusiastic, and border more on confusion.  “How far?  Did you say 15K or 50K?  How far is a 50K?  WHY would anyone want to do that?  I don’t even like to DRIVE that far.”

So why do I want to run 100 miles?

Well, for starters, because I still have chronic hip pain that is worst when I sit, so even I don’t like to drive the THAT far!!!

But the REAL short of it???

Because I think I can.

The 100-mile distance has fascinated me for well over a decade.  There is a wonderful short video that chronicles the reasons that some runners gravitate towards this distance.  I saw this video for the first time a few months after my first PAO and I have watched it obsessively ever since, including from my hospital bed about 6 hours after my second PAO.  It gives me chills each time I watch it!  https://m.youtube.com/watch?v=h7fROiAj-PE

For me, the process of ultra-running mirrors the PAO recovery process.  In ultra-running you set out to cover long distances on your feet over many hours, and there is a lot that can go wrong.  The training and racing, just like PAO recovery, require patience, commitment, determination, mental and physical endurance, and the willingness to accept things outside your control.  I am fascinated with the concept of failure, and there is something humbling and liberating about the idea of running a 100-mile race.  For sure my hips could fail me, but there are many other circumstances that could fail me – inadequate rest, poor nutrition, a sprained ankle, extreme heat, snow, dehydration, poor navigational skills, getting eaten by a mountain lion….  There is an odd sense of comfort in taking on an event where my success may be affected by so many variables other than my hips.

Overall my PAO surgeries and recoveries have been incredibly successful, and the fact that I want to attempt a 100-mile race is partly a celebration of the fact that I CAN!  There have been so many times since surgery that I have doubted that I would ever be able to run again, and each mile I get on the trails is a gift.  But my attempt to run a 100-mile race is definitely not a defiant statement to overcome hip dysplasia, but also a willingness to live with the physical, mental, and emotional sequela of it.  In essence, it involves a commitment to doing exactly what the runners in this video recommend: “being calm, quiet, and focusing on the task at hand.  Just let stuff happen” (scary ideas for a “control freak” like me!).

A deep, dull ache settled into my right hip.

A deep, dull ache settled into my right hip around mile 18 of Cincinnati’s Flying Pig Marathon, my 24th long-distance race.  It didn’t go away for the rest of the week, so I did what any die-hard, seasoned runner would do: I promptly ignored it and ran a 50K trail race the next weekend.  When the pain stuck around for another week I decided to go see a physical therapist.  She wasn’t sure what was causing my symptoms but warned me not to run again until getting X-rays in case it was a femoral neck stress fracture (if you ever want to make a runner freak out, mention the words “stress fracture”).

So, two days later I was in an orthopedic surgeon’s office getting X-rays and anxiously waiting for him to tell me that I had a stress fracture.  I was mentally preparing myself to

1) not cry in front of him, and
2) take 6-8 weeks off from running (it might as well be eternity!!!)

Instead he told me that he couldn’t help me and gave me a piece of paper with the words “Ganz Osteotomy” and the name of a surgeon written on it.  I was stunned.

I think the rest of our conversation might have gone like this:

Me: “So there’s definitely no stress fracture?”

Surgeon: “No – there’s no stress fracture?”

Me: “So I can leave here and go for a run?”

Surgeon: “I would not recommend running more than one or two times as week.”

Me: “But there’s no stress fracture, right?”

Surgeon: “No.”

Me: (whew). “So today can be one of my two days?”

So I left his office and did what I always did to clear my head.  I went for a run.  But then I started to process everything.

I had certainly heard of hip dysplasia before (and not just in dogs).  As a developmental pediatric physical therapist, I regularly screen all infants and children I treat for hip problems.  I provide education to parents of infants and children with neurodevelopmental diagnoses on activities to optimize hip development, and I have spent many weekend hours calling around to local stores in an effort to track down car seats that can accommodate young children in Spica casts who were ready to leave the hospital.  But even though I work in physical therapy I had never heard of hip dysplasia in an adult.  I sought opinions from many surgeons, read every research article I could get my hands on, and met other adult patients with hip dysplasia.  I modified my activities, went for running gait analyses, and worked with physical therapists, but the deep dull ache and constant muscle fatigue wouldn’t go away.

I had a right hip arthroscopy to repair my labrum and periacetabular osteotomy (“PAO,” a surgery to move the hip socket into a better alignment) in January 2015.

Based on multiple consults with surgeons, I truly believed that I was “one and done” for surgery, but during my recovery a different, but all-too-familiar, ache and feeling of instability started to settle into my left hip.  Over the next 18 months the aching and instability progressed to the point that I couldn’t tolerate sitting for long periods of time, had to start rationing house and yard work, and was having episodes of instability during patient care.

My left hip arthroscopy and PAO were in October, 2016.

My History of Running

On August 27, 1997 I came home from my first day of high school, put on my running shoes, and ran out the door.  Until that day I had never cared much for running.  I was a fast kid, but even I thought that the mile run in gym class was the greatest form of childhood torture.  But I came home from that August afternoon run with a sense of pride and power that I had never felt before.  1.5 miles!!!  I had run 1.5 miles!!!  Needless to say, I was giddy.  So the next day I came home from school and put on my running shoes and ran out the door again.  And again.  And again.

My sister calls me a “Zen runner.” This is pretty funny because most people who know me would never use my name and the word “Zen” in the same sentence.  “Anal, OCD, stubborn, driven, and crazy” perhaps.  But “Zen?”  Probably not.  Ironically, I think she might be right.  In spite of the races I’ve done and the distances I’ve run, I generally don’t care about time, pace, or place.   Instead, running is my time to relax and take in the world around me.  Perhaps it is my Zen.  (Of course, I did just cave in recently and bought a Garmin, and it is definitely satisfying my inner-Excel-spreadsheet-loving-nerd!)

Running quickly became a central part of my life.  It was rare that a day would pass when I didn’t run at least a few miles.  Running was my happy place, and the roads and trails were where I felt like my truest self.  Running was where I went to when I was happy, sad, frustrated, restless, confused, overwhelmed, or content.  It was my physical, mental, and emotional outlet.  Running was how I explored the world.  It was how I made friends.  It was where I went to dream.  It is where I went to vent.  It was where I went to pray.  In essence, it was my coping strategy for life.

For the first few years the idea of running a marathon would occasionally flit into my mind, but the idea of training for a longer race definitely interfered with the informal nature of my running.  But in 2003 I bit the bullet.  I was studying abroad in Italy and had the opportunity to run the Venice Marathon with one of my professors and his wife.  My professor was a seasoned marathoner, but it was going to be his wife’s first marathon.  The idea of training with someone who knew what he was doing while still being in the company of another first-time marathoner seemed too good to pass up.  And you know the adage, “When in Rome… (or Venice, I suppose).”

Maybe it was the misconception that there would be Nutella-filled crepes to celebrate the end of every long run (ah, but there should be!), but I returned home from my semester abroad having “caught the marathon bug.”  Over the past 15 years I’ve accumulated a total of 15 marathons, nine 50-kilometer races, two 50 miler races, and a 76 mile ultra-marathon crossing of the Foothills Trail.  I have put over 30,000 miles on my hips, have experienced amazing cities and backwoods trails, have made life-long friends, have been empowered by conquering new distances and faster times, and have been humbled by occasional wipe-outs.  Overall, I have had a great deal of fun!