Patient Stories

Joyleen

Hi everyone! My name is Joyleen and here is my seven-year hip dysplasia journey:

August 2011: 1st left labral repair with Surgeon #1
March 2012: 2nd left labral repair with Surgeon #1
July 2012: Bi-lateral hip dysplasia diagnosis
May 2013: 1st Left Periacetabular Osteotomy (PAO) with Surgeon #2
November 2013: 1st Left Hardware Removal with Surgeon #2
April 2014: Overcorrection of PAO diagnosis
October 2017: Left PAO Revision with Surgeon #3
December 2017: Left labral reconstruction with Surgeon #3
May 2018: 2nd Left Hardware Removal with Surgeon #3
December 2018: Left Total Hip Arthroplasty (THA) with Surgeon #3

Disclaimer #1: These dates are not meant to induce fear or anxiety. My hope is that every reader will see the differences in each story and will find strength to push through a difficult season.

Here is my story:

My journey began in Summer 2011 when I was diagnosed with a left hip labral tear. For those of you who do not know what the labrum is, it is cartilage in your hip joint (and shoulder joint) which deepens the hip socket where the head of the femur sits in. Anyways, I had decided to have this repaired prior to my junior year of college. But my recovery after this surgery did not go as expected. In fact, I had re-torn my labrum less than six months after surgery. So, my first surgeon and I decided to correct it again with hopes of me returning to my active lifestyle.

Unfortunately, I never fully recovered from my second labral repair. My first surgeon couldn’t figure out what was wrong and mentioned there was nothing left he could do. Emotionally, I was frustrated, annoyed, and felt defeated. I had been on crutches for most of my junior and senior year of college. However, instead of remaining in this state of mind, I decided to pursue more opinions regarding this problematic hip.

Because of my persistence, I met a physician who was able to diagnose me with bi-lateral hip dysplasia! Now, I had no clue what this was at the time, so I decided to research my options. I found that it could only be corrected through more surgery: a Periacetabular Osteotomy (PAO) or Total Hip Arthroplasty (THA). I thought since I had two labral repairs, might as well pursue the THA.

WRONG. The joint replacement doctor I met with was clear that he’d never perform this surgery on a 21-year-old and referred me to a pediatric orthopedic surgeon. The pediatric orthopedic surgeon explained in detail the PAO, its recovery, and explained we could move forward with it once my school year was over.

Third surgery was down in the books and it was HARD. The pain that my second surgeon described was right on the money. This was unlike the labral repairs I had gotten – it was worse.

Disclaimer #2: I have a very low pain tolerance! Everyone handles this pain differently.

The recovery was a tough one, but I was blessed and humbled to have a strong support group to cheer me on. I was determined to live a normal life when at about 5 months post-op, my hip pain returned – back to the surgeon I went. He explained that my screws could be causing the pain and that since my bone had healed, we could remove them. Surgery four arrived and it was nothing compared to the other surgeries – it was so much easier! After my hardware removal, it was time for me to live my life and man was it getting good; I was engaged to the man of my dreams and we were beginning to plan our future.

At ~10 months post-op from my PAO, I returned to my surgeon complaining about more pain. We tried pain management which failed so another MRI was ordered. This time, it came back clear. It was time to get a second opinion. My second opinion told me that my hip had been overcorrected (say what?!) and that I needed a revision PAO.

Disclaimer #3: My 2nd surgeon is fellowship trained. This complication is very uncommon but can happen to anyone. Even the most experienced surgeon has had this complication.

I called my surgeon and told him what had been said. He encouraged a third opinion. The third opinion told me that although my hip was overcorrected, there was a 50-50 chance a revision PAO would work. Seeing as there was no reproducibility with this procedure, we opted out and I decided to just live with the pain.

Four years later…
I am a wife, a mom to an 18-month-old, and had recently returned to work full time. It was then that I really noticed that my hip was hurting badly; I was limping by the end of the day. Initially, I thought my muscles were causing the pain, so I returned to Physical Therapy (PT). A few weeks in, the pain was still there – so it was time for a diagnostic injection. Since I had gotten some relief from the injection, my surgeon ordered another MRI. The results showed a third labral tear. My heart sank. I knew exactly what that meant. No amount of PT or decrease in activity was going to fix the tear. I needed more surgery. To my surgeon I went…

We spoke about a few options: a scope, a surgical dislocation and arthrotomy, or as a last resort, a revision PAO. Instead of making a decision, we decided to get another opinion. This surgeon examined my hip, reviewed my imaging, and said: you need a revision PAO.

TEARS. Not literal tears but I was definitely crying on the inside. I did not WANT to go through that again. It was different this time too – I was a wife and a mom; how could I possibly go through this again? Between surgeon #2, this second opinion, and a surgeon I had seen years ago, the consensus was a revision PAO with surgeon #3 since he had some experience of performing a revision PAO. Now the tears were real…

My revision PAO date arrived and I was nervous, scared, and terrified of the recovery. I remember waking up and my husband telling me my labrum was not torn, it was shredded. I needed another surgery to repair this. Surgeon #3 later explained that my labrum was beyond repair and I needed a labral reconstruction – we could potentially do this in eight weeks. Talk about amazing news to hear after major surgery!

The recovery was much harder this time around. I had to rely on a squad to help my husband and I with the cooking, cleaning, pick up/drop off of our toddler, babysitting, etc. It was intense. It was not fun. I felt alone and defeated often. I also found myself going crazy at home because I couldn’t do anything – I thought I was failing as a wife and mom by being in this condition.

Luckily, the squad I relied on constantly reminded me that it was only a season. Surgery number six arrived and although I was still experiencing post-op pain from my revision PAO, I was focused on the end goal, living pain free. The labral construction was successful, but the recovery was slower than ever – no surprise there!

I remember I felt like this recovery was going to break me. I was not meeting the typical goals for how far along I was. Again, defeated and frustrated – it was really obvious at this point. I had many ugly cries and meltdowns. Luckily, my care team never gave up on me. Instead, we tried many things: hydrotherapy, PT, injections, deep tissue massage, you name it.

At six months post-op from my revision PAO, we decided we could remove the screws. I was still on one crutch (long time, I know) and still in pain, but another step forward to being back to normal. A few weeks later, I finally weaned off of that one crutch and continued with physical therapy. My muscles were getting stronger but extended standing, sitting, and walking for long periods of time aggravated my hip. In addition, my right hip was starting to hurt as a result from overcompensating. Mind you, I have hip dysplasia in my right hip along with Femoroacetabular Impingment (FAI).

I returned to my current surgeon. We had discussed doing a PAO and scope on my right hip in December but also discussed a diagnostic injection in the left hip – if I had relief, it would confirm that the pain is coming from my joint. If not, I’d need additional testing. I had my diagnostic injection and had relief. Time to talk to my surgeon. We had decided that it wasn’t worth proceeding with my right hip PAO and scope without addressing my left hip – I would be miserable. The only thing left to do at this point was a Total Hip Arthroplasty/Replacement (THA/THR).

Now, the purpose of ALL of these surgeries was to delay the THA. To hear these words were heartbreaking. As I write this, I am still struggling to swallow this big pill. Will this recovery be much easier than past surgeries? Yes. Will I finally get relief? Yes. You would think this would be an easy decision but it’s not… it’s been an exhausting journey. All of these emotions and thoughts are completely normal. It’s okay to be afraid of making the wrong decision especially when I know that I’ll need another THR. However, my end goal remains the same: I want to live pain free. I want to be able to walk in the grocery store without limping at the end. I want to run after my toddler and future kids without wondering if it’ll aggravate my hip. I would LOVE to return to one of my passions, dance. In the end, will I get through this? YES!

I know my story is long, complicated, and a bit crazy. However, it remains my story. And despite this being one of the hardest things I’ve had to face in my life, I know it will get better. I am hopeful and convinced that I will be able to live a normal life. So, here is some encouragement for those of you reading this story:

1. Advocate for yourself. Your voice matters – never settle!
2. Accepting help doesn’t indicate weakness. It’s a sign of strength.
3. Stay positive. Setbacks are always a possibility, keep moving forward!
4. Do not compare your story to others. Everyone’s story is different.
5. You are strong and capable of getting through this!

I’ll end my story with a quote that has helped me tremendously – I hope it can provide comfort to you all as you write your own story.

“You never realize how strong you are until being strong is the only choice you have.”