The PAO buddy system: Healing through connection

Leigh Lozano and Alyse Scanlon PAO patients Thriving lead image

For people with significant orthopedic hip conditions such as hip dysplasia, a periacetabular osteotomy (PAO) is a major surgery that can reduce or eliminate pain, while also increasing hip function. However, the post-op recovery and rehabilitation process can be long and sometimes painful.

“Recovery is an up and down process,” says Ariana Moccia, a nurse practitioner who works closely with patients in the Child and Young Adult Hip Preservation Program at Boston Children’s Hospital. “It’s important for patients to be able to share their frustrations and successes with somebody who really understands.” That’s why Ariana and orthopedic hip preservation surgeon Dr. Eduardo Novais have been working to connect prospective PAO patients with others who have already gone through the surgery.

Three of the patients who helped initiate the PAO “buddy system” at Boston Children’s share their experiences.

Stacey: Extreme runner and the first “buddy”

Stacey Sarber Thriving PAO patient

Stacey has a long family history of hip dysplasia, including her mom, who had a hip replacement in her 40s. As a college runner, Stacey began to feel pain at age 19, and was diagnosed with hip dysplasia. She continued running after grad school, participating in marathons and even 50k trail races, but tore her labrum while training for a marathon.

Dr. Michael Millis, an orthopedic hip surgeon at Boston Children’s, was the first person to tell me I would need a PAO, and I immediately started crying. He told me that without surgery, I would need to have my hips replaced before I was 35. I was only 27 at the time. I had seen my mom struggle for years with her pain, and that made this decision really easy for me to make — I knew I needed to have the PAO.

I had my surgery in 2014, and didn’t have anyone else who had gone through it to talk to. So, when a friend told me she met a girl at the gym that was going to have a PAO done at Boston Children’s, I was really excited to talk to her and help her out. I felt bad that she had to go through this tough process as well, but I also knew I could help her prepare for it, since I had already gone through it all.

Stacey Sarber PAO patient Ragnar race team photo
Stacey’s Ragnar team of all PAO patients

Leigh and I first met over coffee, and we talked for four hours. We have such a strong connection. I’ve since become really good friends with other extreme runners through a Facebook PAO group, and we’ve run in the Ragnar relay race out in Colorado twice — last year our team was entirely made up of PAO patients!

Sometimes I get down about my hip situation, because although I’m considered “high-functioning,” I’m not quite at the level I was before. But often when I start feeling sorry for myself, I remember that if it had not been for this surgery, I wouldn’t have met Leigh, and I wouldn’t have made all these great friends over the last few years.

Leigh: Triathlete and two-time PAO buddy

Leigh Lozano PAO patient bike

Leigh is a triathlete and active weight-lifter. She had been experiencing hip pain for years before she was diagnosed with hip dysplasia. Leigh is now a PAO buddy for Alyse, and is connecting with another prospective PAO patient with the help of Ariana.

“My biggest concern going into the surgery was just whether or not it would work. Dr. Novais gave me the statistics, and was really straightforward about the procedure and everything that could possibly happen. I was glad he didn’t sugarcoat it, because I needed to make an informed decision.

But at the same time, talking to a doctor is a little like talking to your dad. The conditions that require PAOs mostly affect women, so there are things that he wouldn’t have the firsthand experience to tell me about. It can be hard to ask your doctor about what happens if you get your period, or how you’re supposed to go to the bathroom after this surgery. That’s one of the many reasons why finding Stacey was so helpful.

We all experience anxiety, but talking to someone who went through the same surgery helps you feel so much better. They know what you’re going through, whether it’s pre-op with pain or post-op with just how difficult it makes your life. You touch on some of these topics with the doctor, but as much as they know about the surgery, they aren’t going to be able to tell you what it’s like to live it.

Knowing how athletic Stacey is and seeing her back to running was also really important for me, since I’m also very active. She told me about the complications she had, which helped me know what to expect, and she was there when I needed someone to complain to. We’re both able to talk through our frustrations and empathize with each other.”

Alyse: Social worker and former gymnast

Alyse Scanlon PAO patient Thriving

Alyse was a gymnast her whole life, but she began to have pain in her hip as an adult when she was no longer competing. She was diagnosed with hip dysplasia and underwent an unsuccessful hip arthroscopy at another hospital in 2014, which left her in pain. As a social worker, Alyse is constantly on her feet and often travels up to 200 miles a day doing home visits.

“Without the hip team at Boston Children’s, I don’t think I would’ve been nearly as successful. Ariana was constantly checking in with me and was there any time I had a question. Dr. Novais even came to visit me in the hospital on his day off, just to make sure I was doing OK.

But even with all of that care, having Leigh as my PAO buddy was such a help. We had the same surgeon, same surgery, and are about the same age. The surgery is so taxing physically, mentally and emotionally. Having someone who not only went through it, but also has a really similar personality and the same surgeon, it was just a huge relief. Any questions I had, I knew I could go to her — I wouldn’t always have to be reaching out to the medical team.

It was nice to be able to talk to Leigh in those anxiety-fueled moments and get reassurance like “I had that too, it’s very normal,” or even the opposite of “I never experienced that, you should maybe talk to Dr. Novais.” If I didn’t have Leigh, I think the surgery would’ve had a much more negative impact on my life.

I would love to be able to be that person for someone else. I’m open to anything that could help future patients.”

Moving forward

Many patients like Alyse have expressed interest to Dr. Novais and Ariana in being a PAO buddy. Ariana does her best to match patients with similar medical situations so their recovery experiences are fairly similar.

“As much as we want to help and be available,” she says, “the buddy system adds another level of support that we as care providers can’t give.” Novais adds, “We’re always available for patients to text or call. But sometimes they have questions that someone who has actually gone through the surgery can answer from experience. And other times, they just need to vent to someone who understands.”

Learn more about Boston Children’s Child and Young Adult Hip Preservation Program.