My hip story begins before 2009, before two dozen hip surgeries, before losing my hip and 1/3rd of my proximal femur, before my life changing forever…
My story begins in college when I was playing basketball during an Army ROTC tournament and thought I had pulled a muscle or just tore some cartilage. Little did I know that the imaging would reveal that I had hip dysplasia as well as a torn labrum, impingement and a cyst. I met with a “specialist” and surgery was scheduled for the summer of 2009, after my junior year of college was complete.
The surgery was the first of twenty-four total (forty-one surgeries overall) hip surgeries I would end up having between both hips. Although I saw a specialist, my RPAO was not done correctly as he was not trained properly and not a hip preservation specialist. But, at the time I did not know that, nor where there resources to find surgeons or the resources that are available today.
I ended up going out to Boston Children’s (from my hometown of Indianapolis) to see Dr. Michael Millis and the Adolescent and Young Adult Hip Program that Children’s offered about a revision to my right hip to correct the original PAO. Millis actually helped in diagnosing a connective tissue disorder I had called, Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that causes a defect in the collagen and connective tissues of the body leading to everything from a joint dislocating to an aortic aneurysm. It helped answer a lot of questions from past medical mysteries and issues. He also sent me to their genetics department for a full work-up as well. Millis did revisions to my right hip and corrected issues of my femur that where missed entirely. The surgeries where difficult, painful and where not without their own complications due to poor healing because of my EDS. I required revisions due to improper healing and it would not be the last time this would happen.
I spent several years going back and forth to Boston to get my right hip to a “stable” point. By 2013, we thought we had reached that point. I knew that my right hip would never be perfect, but improved and functional was more than what I could ask for at the time. Because of all the time spent on crutches and years of abuse to my body, my shoulders where shot and dislocating in my sleep. I ended up having surgeries on both shoulders before I could have another hip surgery so I had something stable to use to hold up myself. My hips, shoulders, EDS, etc., would be the ultimate reason I would leave the Army after 7 years. I took an Honorable Discharge in March 2014.
July 2013 also brought some scary moments as well. I had skin breakdown on my thigh that was a small external wound that turned into a large infected wound very quickly due to my EDS and inability to heal, etc. It got so deep so quickly we believe it seeded the hardware that was left in my femur from my femoral osteotomy revision the year prior. During surgery, the hardware was pulled, but I spent the summer on IV antibiotics via a PICC line. It would not be the last time I had a PICC line! By the end of the year my left hip had enough and needed some work done as well, so we did labral repairs, impingement resections, capsular plication, IT band release and a bursectomy. The surgery was in hopes of avoiding an LPAO, but instead it bought me a couple years of relief. I ended up having my successful LPAO and labral reconstruction at the end of 2015. The experiences, surgeons, recoveries, and outcomes couldn’t have been more different. My left hip is still going strong with a couple of tweaks, minimal arthritis, and the graft is still holding well according to scans. I’ve had compensation issues due to the fact that my left hip does ALL the work because of my right hip circumstances, but with an IT band release and bursectomy repeated just this past March (2021), my left hip feels really good!
As for my right hip…By the time 2016 rolled around, my right hip was deteriorating. The pain was worsening as well as the function. I even had a couple more surgeries on it after seeing Millis to revise boney impingement, etc., but it was a losing battle. Everything and then some had been tried on my right hip. I had given it my all trying to salvage my hip and had reached my end point. At this point, I approached my hip preservation surgeon, Dr. Swann, and requested to have a total hip arthroplasty be preformed so that I could “return to my life”. He agreed and we set the surgery date for November 2016. But, man was I in for a wild turn of events.
The first 4-6 weeks went really well and all seemed fine, until the beginning of 2017. Then I started showing signs of infection. By mid-January, I had an incision and drainage (IND) surgery to washout everything from an infection. I spent weeks on IV antibiotics via a PICC line. By April the infection had returned and we decided to replace the components with an antibiotic spacer. So I had an explant and exchange for antibiotic spacer. I was placed back on IV antibiotics via a PICC line, except this time the vancomycin caused acute kidney failure landing me back in the hospital. The infection returned by June and then the decision was made to take everything out and leave it out and do what was called a girdlestone procedure. The stem wouldn’t come out, so they also had to break my femur in addition to everything else. So again, back on the IV antibiotics and home to recover from what was the most difficult period of my life. I was grieving the loss of my hip, wondering if I’d ever be “normal” again, and just so exhausted from being so sick and in so much pain.
Several months later, my bones weren’t healing, so I was put on an injectable medication called Forteo to encourage bone growth. Using crutches for everything was exhausting and impractical. It was also too much stress on my prior repaired shoulders. It became clear to me that getting a new hip wasn’t going to be a quick process, so I conceded to a wheelchair. At first, I felt like I was giving up by getting my own chair, but in reality what I gained was freedom. Wheelchairs offer freedom and independence and I’m so thankful for mine.
I discussed with Dr. Swann and my medical team about placing another hip come August 2019. I had been infection free for over a year. Everything looked good; labs and scans came back clear, so the surgery was a GO. So, my mom and I flew out to Dr. Swann’s new practice in Denver, CO for surgery. Even my best friend flew into Denver for the surgery! Everyone felt so good going into this one. But, by October, I was experiencing symptoms of an infection yet again. So, we quickly flew back and sure enough I had a major infection brewing. All the components where taken out and returned to a girdlestone once again, leaving no hardware in my hip whatsoever. I went back on IV antibiotics via a PICC line for several more weeks. I tried to remain in good spirits, but it was a huge blow.
Five months had past in my recovery and I started to feel good again. It was March 2020, Covid had just started and I was on the phone with Dr. Swann talking with him about everything and he was checking up on me and making sure I was doing okay. All seemed fine. Not even two hours after I hung up the phone my entire right thigh was red/purple and I knew immediately it was an infection. I grabbed my purse and headed to the ER with my mom. But, when we got to the ER it was anything but usual. It was the beginning of Covid, so my mom couldn’t come in and had to stay in the car. I was by myself. Everyone had to wear masks. And my leg hurt like all hell. The ER suspected a septic joint and where running septic protocols which meant things where going very quickly making me even more anxious while I sat there alone and in pain. I didn’t even know how this could happen. I didn’t have any open wounds. There was no hardware left in my hip. I was at a loss. Fortunately, Dr. Swann had a colleague locally that I could contact, so I called him and was transferred by ambulance to another hospital to have emergency surgery. So, yet again, I was placed back on IV antibiotics via a tunneled central line since I had so many prior PICC lines they couldn’t get a line and had to do something different for access. The reason for infection was dead bone. So another portion of my proximal femur had to be resected down to healthy tissue. The dead bone was a breeding ground for infection and likely the cause for the infection and what harbored the bacteria, etc. Why it occurred, we don’t know. So between the surgeries and infections I have lost 1/3rd of my proximal femur, making my right leg about 3.5” shorter than my left.
At this point in time, I have no plans of attempting to place another hip. It’s the definition of insanity trying to repeat the same thing over and over again, expecting a different result. There is another reason for the infections and that needs to be figured out before I would consider anything further. I have come to terms and peace with the fact that I have and will have no hip for the foreseeable future. However, I do not let that get in the way of what I want to do in life. I want to return to school for medicine and to become a Physician’s Assistant or PA. I also am an adaptive athlete and am sponsored by the Challenged Athlete Foundation – Operation Rebound for wheelchair racing. I plan on becoming a dual-sport athlete in adaptive skiing (monoski) for the winter months.
I get to be involved with an amazing nonprofit, Miles4Hips, that helps raise awareness for hip dysplasia by serving as a board member for the past couple years. I love being able to give back and help others through educating and raising awareness as well as raising money that goes towards research through the International Hip Dysplasia Institute. I co-admin a Peri-Acetabular Osteotomy (PAO) Group on Facebook. A PAO is the surgery that is done to correct hip dysplasia. My co-admin is another board member from Miles4Hips as well. Helping to answer questions, cheer on and even listen to someone vent their frustrations to lift their spirits has been an awesome thing to do. It feels good to pay it forward. I also send out PAO bracelets that say Persevere And Overcome to help motivate and encourage others.
My journey started off thinking this was going to be an arthroscopic surgery and six weeks out of the action. Never in my wildest dreams would I have thought it would be over a decade and two dozen hip surgeries later I would still be dealing with these issues. Nor would I believe you if you would have told me I would have ended up without my hip entirely. This journey has changed me physically and mentally. It has taught me that you are so much stronger and more capable than you think you are. I will leave you with my favorite quote…
“Hardships often prepare ordinary people for an extraordinary destiny.” C.S. Lewis