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!