Just a Bunch of Hippies on the Trails: The Bear 100 Pace and Support Crew

Many ultra-runners choose to have a team of crew members and pacers to help them make it through the long miles.  Crew members often meet the runner several times during the race and can provide gear, food, and hydration, as well as mental and emotional support along the course.  Pacers are individuals who are not running the actual race but who join the runner for sections to help keep the runner safe, on pace, and maybe even provide some entertainment and distraction to help the miles pass.  I am beyond blessed to have several friends who I have met through my hip dysplasia journey who are willing to sacrifice time away from work, family, and other life commitments to support me during this adventure.  In doing so, they helping to support the International Hip Dysplasia Institute and our greater mission!  Please enjoy their stories below about their hip dysplasia journeys and how they continue to move forward.

The awesome Miles4Hips Crew/Pace Team at the start of The Bear 100 (from left to right: Genn, Stacey, Nancy, Brent, Shannon)

Shannon and Brent Carroll (Ohio)

Hi, we are Brent and Shannon Carroll from Cincinnati, OH.

          

Shannon and Nancy met through a mutual friend during her time in Cincinnati. Our friendship started as strictly hip dysplasia talk and quickly blossomed into an incredible friendship. We have supported each other through bilateral PAO’s – tears, laughs, cheers, and everything in between.

Shannon’s Story…

Nancy and Shannon sharing some miles together along the Bear 100 course

I’m a wife, mother of two and fitness lover. I was diagnosed and treated in infancy with the 80’s version of the Pavlik harness, triple cloth diapers. After years of hip, back and lower extremity pain in my teen and young adult years, I went to see a hip preservation surgeon at 32. To my surprise, I was diagnosed with moderate hip dysplasia and hip preservation surgery was suggested. My pain was not a result of years of high impact championship Irish dancing and distance running or “getting older.” I felt a sense of relief. My pain was validated and there was something that could be done to help. After seeking out multiple opinions, I decided to move forward with bilateral hip preservation surgery. This journey has not been linear. I have encountered unexpected bumps that have challenged my faith. At my lowest points, I questioned if the pain would end… if my body would heal… if I made the right decision to have surgery.  After 3 years, 6 surgeries, and countless PT appointments, I’m thrilled to share that my hips have never felt better! I made the right decision to have surgery.  I am so thankful for my husband, friends (Nancy! and our aupairs) and family that have made these surgeries and recoveries possible.

Brent’s Story…

I’m a husband, Dad, and marathon runner than grew up in Austin, TX. Our daughter Katharine was born in January 2015 via emergency C-section due to her being breech. Standard protocol led us to follow up with an orthopedist to rule out hip dysplasia. During that visit, family history was brought up, and with my wife Shannon having had history with dysplasia dating back to childhood, it led to her also getting evaluated. That is when Shannon was diagnosed (again) with dysplasia at the age of 32, and her first PAO surgery was scheduled (after months of discussions, research, second opinions and prayers) for later that year. As a husband to a PAO warrior, I know it’s an understatedly arduous journey. These past years have been more than trying on Shannon (and secondly, myself). But the support she received from family/extended family/friends has helped guide us through it, and after six surgeries spanning two and a half years, her hips are finally showing signs of recovery, with only one screw/bolt removal surgery on the horizon. By the way, Katharine is great and dysplasia-free, but it’s so fortunate that we made that a appointment!

Gavin and “Healthy-Hips-Kat” Carroll

We are thrilled to support Nancy’s 1st century run to raise awareness and funds for IHDI. Brent, an experienced marathoner, will serve as an overnight pacer, his 1st trail run! He is determined to keep Nancy awake and moving with plenty of Dad jokes. Shannon, a retired runner, will serve as a crew person on the ready with hydration and snacks and gear.

Brent and Nancy taking in the views along The Bear 100 course

Genn Gibbs (Colorado)

My name is Genn and I am a distance runner with bilateral mild hip dysplasia and excessive femoral anteversion.  As a baby, my mom noticed my hips seemed “funny” and my legs rotated in a lot.  My pediatrician told her that my hips would be fine and I would grow out of it.  I continued to grow and develop without problems, and I began to run in middle school and continued running competitively until my late twenties when I developed mild hip pain—first on my left side, and shortly after, on my right side.  My symptoms were mild and inconsistent, and I sought out several opinions from highly regarded hip specialists across the country.  While all of the hip specialists agreed that I had bilateral hip dysplasia, there was less agreement as to what was the appropriate course of action—conservative treatments, bilateral scopes, or bilateral PAOs with or without femoral osteotomies.  While I am incredibly thankful to currently be pain free with conservative treatments after years of extensive physical therapy and consistent soft tissue work, I am always aware that my luck may run out and I am thankful to have had a swift diagnosis, excellent physical therapy, and a plan of action when my pain returns.  I know many others are not as lucky and sometimes go years without a diagnosis or a plan to address their pain.  I am also thankful to have connected with other inspiring, persistent, patient, and strong women along the route of my hip dysplasia journey; they have made something very scary easier to accept.  While I am no longer running competitively, I am running regularly with a newfound appreciation, and I never take a single step for granted.

Stacey Sarber (Massachusetts)

My name is Stacey and I’m a distance runner (and general outdoor enthusiast) with bilateral hip dysplasia. I started experiencing pain when I was 19, during college cross country season, where I saw an orthopedic who confirmed what we already knew was likely – hip dysplasia. My mothers side of the family has many counts of hip dysplasia – my mom, aunt, grandfather, and great grandmother are/were likewise afflicted. By the time I was diagnosed I had already seen my mom go through bilateral FO’s, a hip replacement, and hip revision. It made the decision for surgery easy for me as I already knew what life would look like if I waited. So at 27 I had an LPAO and hardware removal 5 months later. Initially I was to have both of my hips done but my surgeon decided to hold off on the second, as it was no longer symptomatic after the first surgery. Here I am, now 4 years later, running to my hearts content, having found a great love to hiking along the way, and I’m so thankful for the people that this crazy obsure surgery have brought into my life!

     

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.