Connie’s Story

After countless hours, days, months, and years in physical therapy and six hip surgeries between both hips, here I am today recovering from the most recent surgery. At the age of 41, I am now walking on two prosthetic hips due to hip dysplasia. How did I get here?  Well, here’s my story.

At the age most children began walking, I was struggling. I tried, with all of my might, to walk, but I just couldn’t do it. After many failed efforts, my mom took me to the doctor to see what was wrong with my legs. Upon xrays, all the doctor told my mom is that I was missing bone. As a result, I went to physical therapy for several years to learn how to walk and wore hard-soled shoes for the first six years of my life. I can’t tell you how excited I was to get my first pair of real tennis shoes!

As time progressed, I lived life fairly normally.  I would run, jump, and skip like any other child. One thing was different, however. Unlike most other children, I was able to fold myself up like a pretzel and put my feet behind my head without thinking twice. I was often the entertainment for my family. At every family gathering, I would show off my “trick” that everyone watched me do with amazement.

In my teen years, my hips started to hurt, but I did my best to ignore the pain. I would drag my feet when the pain got too bad and get scolded and told to pick up my feet. Picking up my feet became a chore as I entered adulthood but, like those early days, I tried my best. In my twenties, I had increasing pain. I went to my family doctor and had x rays…to my surprise, I was told my hips looked fine. So, like many other young adults with pain that is not common for that age group, I continued on with it and just dealt with the pain. All the while, my mom reminded me that the doctors told her my hips would only get worse with age. I guess you can say I was in denial at that stage in my life.

In my thirties, the pain increased but I was dealing with other health issues. When my other health issues resolved, I decided I wanted to try to become a runner. Needless to say, my running career was very short lived. Little did I know it at the time, but running caused me to mangle the labrum in both of my hips. At the age of 37 the pain got so bad in my left hip that I could barely walk. I ended up back at the doctor’s office but, this time, I went directly to the orthopedist. He did some manual tests that resulted in a lot of pain. This is when I found out about my first labral tear in my left hip. He educated me on what the labrum is and sent me to a pain specialist for an injection. Upon getting my first hip injection, I was told I had hip dysplasia.  When the injection failed, I was sent to St. Louis, MO for a labral repair. Due to the dysplasia, my labrum tore a second time within two months of that surgery…the pain continued.

After walking around on a failed labral repair on the left hip, my right hip began to hurt as well. In all this suffering and loss of hope, I had a friend that had the same diagnosis as me and who happened to have surgery around the same time I had my initial labral repair. I asked her who she saw because she did so well. That is when she gave me the name of Dr. Clohisy, a world renowned hip dysplasia specialist. It took two grueling months to get in to see him, but he noted the dysplasia immediately. Six months after meeting him, I had an LPAO with labral repair. I went into this surgery feeling very supported from the PAO group, but, at the same time, very scared. I never knew that my diagnosis would lead me to having my pelvis broken in three places, shifted, and screwed back together. I’m also great at growing extra bone, so that had to be trimmed down as well. Overall, my PAO recovery went off without a hitch. I felt very little pain but noticed my right hip going downhill and going down very fast.

As my right hip was being researched, it was discovered that my femur was also retroverted. I had my mind set on preserving that hip because there was just no way I was getting a hip replacement at the age of 39! Well, I was very wrong. Upon having a diagnostic hip scope, the doctor saw that my hip was beyond repair. The labrum was completely frayed and ripped off and there was no articular cartilage. Three months after that surgery, I had my first hip replacement. Due to the version issue in my femur, my femur fractured during surgery which made the process more painful than expected. However, I found that the replacement was a much easier process than the PAO.

Six months after my right hip replacement, my husband and I moved from Missouri to Arizona. During this time, life was great, but I noticed a nagging pain in my left hip…again! I thought maybe the pain was from my weakened glutes because I had carried a lot of heavy boxes up and down stairs. With time, I was not getting better. My hip hurt worse with every step and my back was starting to scream at me as well. In denial, I decided it was time to find a hip specialist in Phoenix (my new home). The initial plan was to just do a scope and clean it up but, to everyone’s surprise, my hip capsule ruptured and caused me to lose all of my joint space. I can’t tell you the tears I cried finding out not even 2.5 years post PAO that my left hip would need to be replaced. In my mind, at that moment, all the therapy and rehab it took to walk after the PAO went to waste! I was broken. I was relieved to know why walking had become such a chore again, but I was also broken.

I now sit here, three weeks after my left total hip replacement and almost 1.5 years following my right total hip replacement, thankful for technology that has allowed me to be put back together so I can relearn to walk again, and feeling blessed to have met many friends along the way. While the struggle has been real and the journey has been long, support groups have played an important part in my life as I have dealt with the effects of having bilateral hip dysplasia, femoral version issues, and joint laxity. Before support groups I felt alone as I was being handed new diagnoses. Support groups have shown me that we are not alone in this journey and that we CAN overcome our trials. So, as I am learning how to walk again, here is some advice I have to offer:

  1. Join a support group.
  2. Know that you are not alone.
  3. There is light, even in the darkest times.
  4. As hard as it can be, do your therapy exercises.
  5. Never lose hope.
  6. Lean on others for advice when you feel “stuck.”
  7. It is okay to admit you need help.
  8. Celebrate the victories, no matter how big or small.
  9. Don’t compare your progress to others; we all heal differently.
  10. Make light of the situation, if you can. And name your hardware and decorate your assistive devices. My hips are named Pinky and The Brain, and I have a polka-dotted cane!

Much love, hippies! I wish you all the very best no matter where you are in your journey. The journey of a thousand miles begins with one step!