Having surgery is not easy, and no one knows that better than someone who has been through it.
CHOC patients who have undergone surgery for either scoliosis or pectus excavatum have banded together to form a mentorship program for other patients who will be undergoing the same procedures. Teens and adolescents can connect with a trained mentor who knows what they’re going through and help them navigate the physical and emotional aspects of surgery and recovery.
While it’s important to seek guidance from your medical team, sometimes as a teenager you just want to hear straight from other teens. We spoke with a few mentors who had spinal fusion surgery to correct scoliosis, and they offered the following words of advice and encouragement.
What is one thing you wish you would have known before scoliosis surgery?
“I wish I would have known that many people go through the same surgery and that I shouldn’t feel alone. I also wish I would have known that recovery may be hard at times and that you will get through it.”—Tyanna, now 20
“I wish I would have known how constipated the medicine would make me. I found that my constipation and stomach pain were bugging me more than my back pain, so I stopped taking the pain medicine pretty early. Also, the catheter sounded scary at first, but it was actually the most helpful thing ever since I didn’t have to worry about getting up to use the restroom.”—Jessica, now 19
“I wish I would have known that I would experience stomach pain as well as back pain. Knowing that would’ve helped me prepare for the pain rather than get nervous about it when I endured the nausea.”—Taylor, now 14
What modifications did you make after surgery?
“I slept with many more pillows around me. Once I got back to school, I brought a pillow to school to use for my back. Going out to restaurants, I would also bring a pillow to support and make my back feel more comfortable. After surgery, I wore mostly baggy clothing, so it was easier to take on and off.”—Tyanna
“I couldn’t carry a backpack, so my school library gave me a set of textbooks for home and a set for school, so I didn’t have to carry heavy books back and forth. I slept with a pillow under my knees when I was sleeping on my back. If I slept on my side, I would put a pillow between my knees and behind one shoulder.”—Jessica
“When I was in the hospital, I had to do physical therapy. The first thing I learned was the barrel roll. This taught me how to get out of bed comfortably and it really helped. I continued to do the roll for a few weeks after my surgery.”—Taylor
Knowing the recovery that comes with this surgery, would you choose to do it again?
“It was a little tough for me during the recovery time, but I know that since I have gone through it once, I would be able to go through it again if I had to. Although having this surgery and recovering was tough on me, it was one of the best decisions I had ever made in my life.”—Tyanna
“Some days were harder than others, but I had so much support from my nurses and family which made me feel so much better. If I had to do this surgery again, I probably would because it wasn’t as bad as I thought it would be and I recovered pretty fast the first time.”—Jessica
“It completely changed my life for the better. Although I don’t have much back flexibility anymore, living my life without the pain and the back braces has just made me such a happier person. Also, I became more confident. Before the surgery, I had a big hump on my back due to my curve and I was very self-conscious about it. Taking that hump away just made me more confident and I loved the way my back looked with my ‘battle scar.’”—Taylor
What advice would you give someone before their own surgery?
“I think that everyone has their own story and experiences with scoliosis, but I would just say, have a great support system and keep yourself surrounded by family and friends to keep you staying positive. Recovery may get hard at times; you just have to keep pushing through it and you will be healed and fully recovered in no time.”—Tyanna
“Wear your hair in French braids the day of surgery so you don’t have to worry about your hair when you’re at the hospital. Dry shampoo will be your best friend! Watch YouTube videos of scoliosis surgery recovery vlogs so you can have an idea of what it’s going to be like. Don’t compare yourself to others and don’t be hard on yourself if it’s taking longer than you thought it would to recover. You will get there in the end; just go at your own pace. It’s natural to feel fear going into surgery, but just go in with confidence and positivity.”—Jessica
“Stay strong. You may want to give up with your physical therapy, but you can’t. The more determined you are, the quicker your recovery will be. I know the pain will be tough. Just know you aren’t alone and there are people there to give you their love and support. You got this!”—Taylor