Keegan's Journey of a Double Hip Replacement
It's been almost a year since Keegan, my husband with ankylosing spondylitis, had his first hip replacement. (A few months later, he'd follow with his second.) His hip pain always was more severe than any other pain in his body. It had been 12 years since the pain started and now after a double total hip replacement, he's doing better than I've seen him in years.
For many with AS, the disease impacts other joints in the body. Up to a third of patients will have hip or shoulder involvement in addition to the spine. I had no idea that so many patients could end up needing additional surgeries and treatments from secondary disease. I would have never foreseen Keegan diagnosed with advanced osteoarthritis at the age of 28.
The before and after images of Keegan's hips.
Is it AS or is it something else?
Keegan remembers it 12 years ago. His lower back and hips started hurting, even though he was young and active. It was around the time we started dating at 17. I remember always thinking Keegan looked like he walked a little stiff, but I assumed it was his height. (He's 6' 3".) But after getting diagnosed with AS and finally finding a helpful biologic, Humira, the pain never went away. His back and flares were finally getting better, which allowed for some better days, but his hips never improved.
At one of Keegan's regular rheumatology appointments, he told his doctor about his continuing hip pain and immobility. Keegan's hips were at the point where he couldn't sit crossed-legged on the floor (also called "Indian style"). He wasn't able to bend at the hips much and riding in the car for a long time caused agonizing pain. We'd hoped that Humira would help, but it didn't.
She suspected something else was going on. She sent Keegan for an MRI, which he had a few months later. Boy were we in for a surprise. His hips were in bad shape. He had complete ligament tears, osteoarthritis, and bone spurs. No wonder why he was in so much pain. I immediately Googled terms from the report and found that there was likely only one solution: a double total hip replacement.
Keep calm and find a surgeon
I immediately messaged Keegan's rheumatologist to ask if we needed to follow up with a hip replacement surgeon. She agreed. Luckily most joint replacement programs in Philly offer a same-week consultation. At our first appointment, they needed to get an X-ray to help inform more of what the MRI found.
The nurse practitioner came in to do a physical exam and ask questions. "Which hip bothers you more?" she asked. "My left for sure," Keegan responded. She had a funny look on her face when he said that. She turned around to show us his X-ray. "That makes sense. Your X-ray is more impressive than your MRI. Your left hip joint is pretty much destroyed."
Support and second opinions
Keegan's parents happened to be in town and came with us to the appointment. I'm glad they did because the second she said that, I sobbed. My mind flashed back to Keegan dragging his leg while walking from hip pain. Feeling him toss and turn in the night because he couldn't get comfortable. I felt guilty, overwhelmed, but a huge wave of relief washed over me. A new path opened up and Keegan can feel better.
We got a second opinion a few days later, which I highly recommend doing, and ended up going with the second surgeon. He had a bit more experience and completed over 300 hip replacements a year. I felt so lucky we lived in a city where we could choose where Keegan could get the best care.
Checking back in with the rheumatologist
Before Keegan's surgery, we messaged his doctor to make sure Keegan was ready from her perspective to go through a joint replacement. For AS patients she told us a few things were important: 1. Get off the biologic before surgery per a doctor's recommended timeline and 2. Get a neck X-ray to make sure doctors knew about any neck problems if he needed intubation, or a tube down his throat, during surgery.
She felt confident that Keegan would feel better once he had both hips replaced. That's totally true. He's able to sit, stand, and do yoga again without any pain. He can play with Kaya on the floor. All these moments he'd thought he may never have again in his life have returned. We're both so grateful we live in a time where he could get these surgeries.
Do you use the word disability to describe your AS?