PATIENT STORIES LIVING WITH SCOLIOSIS

RACHAEL’S STORY

I was first diagnosed with scoliosis when I was about 15 years old by my pediatrician. The curve was 24 degrees at that time. The brace was an option, but I decided to just follow up on the progression and not wear a brace. It was always a relatively slow progression and surgery was never an option at that time.

When I was 22 years old, after not following up for a couple years, I decided to go back to the doctor because I was having a lot of hip and back pain while training for one of the half marathons. The pain became unbearable and I was no longer able to run long distances. My doctor discovered my scoliosis curve had progressed to 60 degrees and shared that the curve would only get worse over time. So, I opted to have surgery so that I could put all the worries of the future progression to rest and hopefully alleviate the pain I was experiencing.

Through lots of research online, we found the Virginia Spine Institute, Dr. Good, and the new Mazor X™ Stealth Edition robotic guidance system. After meeting with Dr. Good and his team and learning about the new robotic system, I had a sense of confidence undergoing such a major spinal surgery. Dr. Good also shared that I would be the first patient in the world to undergo the surgery with the new technology. Being the first patient to undergo the surgery with the new technology was very exciting to me.

I am currently five months post-op and I am so happy that I had the surgery. I am back to work and almost completely pain free.

JAMIAH’S STORY

After noticing that my back was slightly curved, I approached my school nurse for a screening. At the time, she informed me that she could not tell me if I had scoliosis or not but referred me to my pediatrician to be checked. My pediatrician believed that I had scoliosis but wanted another opinion, so she referred me to have x-rays before seeing a local orthopedic doctor. After looking over my back and x-rays, the orthopedic doctor officially diagnosed me with scoliosis.

Due to the severity of my curve at the time of diagnosis, I did not have the opportunity to wear a brace. I had surgery on October 11, 2011. Everyone has curves thrown at them throughout life, this just happens to be one of them for some people. Scoliosis can often be very physically, mentally, and emotionally taxing on an individual. Please know that it is okay to feel whatever emotions that you are feeling but also remember that you have the support of other scoliosis patients around the world — we’ve got your back.

Jamiah is passionate about inspiring, educating, and motivating others who have been affected by scoliosis. She is a member of the Curvy Girls^® Scoliosis Peer-Led Support Group and started the Connecticut chapter. To read other scoliosis stories or connect with a Curvy Girls^® Leader visit https://www.curvygirlsscoliosis.com/groups.

EMMA’S STORY

In 2009, I was diagnosed with scoliosis by my primary doctor. I was referred to a spine specialist in Phoenix, Arizona. After close examination of my symptoms and x-rays, the specialist instructed me to wear a plastic form-fitted brace to correct my scoliosis.

After wearing the brace for over a year, there was no improvement in my curvature. It seemed to be progressing rather than improving. As my scoliosis symptoms began to worsen, I was restricted from engaging in more and more of the daily activities that a child my age should have experienced, like P.E. class, sports programs, and family hikes. My family and I looked into many different options that could help my curvature, such as home exercise and physical therapy. None of these options were capable of improving the curvature of my spine.

In late 2011, I went back to my primary doctor for a checkup. My curve was progressing at an extremely fast rate and irritated me every day. I was in pain and discomfort most of the time and my breathing had become shallow. My primary doctor was very concerned and recommended that something needed to be done as soon as possible. She suggested we looked into Shriners Hospital for children.

After doing some research, we learned you had to apply for the hospital to evaluate whether you were eligible for medical treatment through Shriners Hospital. We applied and I received the great news that I was eligible for treatment. However, the waiting list for the surgery I would need was over a year long, and my curvature was progressing quickly. After the hospital reviewed my case, they put me on the Fast Track list to get surgery as soon as possible. In December 2011, we received the call that my surgery date would be March 19th, 2012.

I was very nervous to go into surgery, but I knew it would change my life forever. I was in the operating room for eight hours while my loving family waited for the operation to be over. After the surgery, I had a long road to recovery. I was at Shriners Hospital for children in Los Angeles for eight days after my operation. All the people at Shriners Hospital were so nice and helpful during my stay.

The spinal fusion I received from Shriners Hospital changed my life and my family’s life forever. I can now do most anything I want without pain or discomfort. I am so thankful for everyone at Shriners Hospital who gave me the opportunity to receive medical treatment.

KELSEA’S STORY

Kelsea McKinley was an active 8-year-old when she was diagnosed with scoliosis in September of 2010. To slow the progression of the scoliosis, she wore a back brace 24 hours a day for about two years.

Unfortunately, the disease progressed to the point where the curvature of her spine was arresting the normal development of her lung, which was starting to press against her heart. Since the brace option did not work, on April 9, 2012, at the age of 10, she had surgery to straighten her back with rods and screws as well as donated tissue.

After nearly a year, she made a full recovery and went on to attend college where she aspired to be a family counselor, so she could help others. Kelsea’s full recovery allowed her to enjoy a normal life, including photography, cross-fit, and hanging out with her family and friends.