When Amanda and her mother were alerted to a curvature in Amanda's spine during an annual school physical, the 13-year-old gymnast and volleyball player "didn't think much about" her scoliosis diagnosis – at first.
But when she learned a year later that the curve in her spine had worsened and she would soon need scoliosis surgery to correct the problem, she feared her days as a tumbler and team player were about to be over – or at least severely limited.
Never has a teen been so happy to be so wrong!
Living with scoliosis
When Amanda was first diagnosed with scoliosis during her middle school physical, an x-ray examination revealed she had a primary thoracolumbar (mid- to low-back) curvature of almost 40 degrees, with a smaller, compensatory thoracic (mid- to upper-back) curve of about 34 degrees.
She was fitted with a Charleston Bending Brace, which she wore at night as directed by her doctor to try and keep the curve in her spine from getting any worse.
To deal with the back pain that flared occasionally ("I would be fine one minute and miserable the next," she says), Amanda went to the chiropractor and took pain medication prescribed by her doctor. While these measures helped Amanda manage her pain and keep up with most of her school and after-school activities, they did little to keep the curve in her spine from progressing at a rate that concerned her doctor and her family.
By the time she had her first visit with the scoliosis specialist she was referred to, Dr. Stephen Enguidanos of the Orthopaedic and Spine Surgery Center in Niceville, FL, – about a year after her initial diagnosis – Amanda's primary spinal curve had increased to 54 degrees and her compensatory curve to 46 degrees.
"Looking at the x-rays taken over a 6-month period prior to her first visit with me, I was very concerned that Amanda's curves would continue to progress, and at a rapid pace," Enguidanos says. "This was an aggressive curvature, and there was no way to stop it with just the bracing."
Preparing for surgery
Many teens – and adults, for that matter – would be afraid of the prospect of having spine surgery. But not Amanda! According to her mother, Julie, once the decision was made that surgery was the best option, Amanda was "psyched to get in and get it over with."
One reason for Amanda's confidence is the bond she and her family developed with her doctor and his staff, an aspect of treatment Dr. Enguidanos says is essential, especially when dealing with young patients.
"Spinal reconstruction is a serious procedure," Dr. Enguidanos says. "So it's really important that I build a strong relationship with the patient and their family beforehand. It allows me to get to know them better, and to help everyone understand what is involved and address any concerns they may have along the way."
By the time she had her surgery, Amanda was in the ninth grade. "The operation went very well," Dr. Enguidanos says. "And post-surgery, she had minimal complaints and her recovery progressed very nicely."
Amanda was able to leave the hospital after 4 days, and continued her recovery from home for 5 weeks before returning to school. During that time, Amanda worked with a tutor to keep up with her classmates, and was even able to take her annual school achievement tests on time. Amanda also realized another benefit of her surgery – she found she'd gained almost 3 inches in height!
Road to recovery
About the same time she returned to school, Amanda started physical therapy to help stretch and strengthen her back muscles and maintain her overall physical conditioning. Amanda's dancing, tumbling, and other sports activities, however, were temporarily put on hold to give her vertebrae and spinal instrumentation time to stabilize and heal properly.
She wasn't on the sidelines for long, though. "I just had to take it slow for the first few months, but then I gradually started getting back into the things I like to do," she says. "I feel like I recovered really quickly, and now I'm back to normal."
Amanda admits she was really concerned her scoliosis correction surgery would decrease her mobility and affect her ability to perform at the competitive level she was used to.
Today, Amanda is enjoying her senior year at Freeport High School, and is happy to be "back up to speed" as a varsity cheerleader, dancer and gymnast. "If she had not had the surgery when she did, I do not like to think about what her life would be like right now," says her mother, Julie. "So, I'm really happy she's where she is today. She's able to do what she wants to do and is so gung-ho about it. She's full steam ahead, and nothing's going to stop her."
My name is Cally, and I have scoliosis. I first learned about scoliosis when I was tested during school in sixth grade. I'd heard the word "scoliosis" before, but all I knew was that it caused a curved back. I didn't know how it would affect me or what treatment options were available until my spine surgeon, Dr. David Polly Jr., explained everything to me.
Today, thanks to my experience with scoliosis, I know more about the condition than I ever wanted to.
Living with scoliosis
Before I had scoliosis, I'd always thought a back brace was just for back support. Through my own experience, I learned that a back brace is also used for the treatment of scoliosis, to prevent the further curvature of the spine. Back braces are another thing I never paid much attention to, but now know more about than many people.
What is spinal fusion? I didn't know the answer to that until November 2005, when I was told I needed the procedure. My scoliosis brace hadn't worked the way we'd hoped and the curves in my back were now at 26, 28, and 46 degrees.
So, I had my T2 to T12 vertebrae fused, supported with instrumentation that included two 10-inch titanium rods and 19 titanium screws and clamps. I have a 13-inch scar down the middle of my back and a 3-inch scar from where they needed to take bone graft.
Most 15-year-olds would probably say they haven't been to the hospital much – if at all. I know they would be nervous like I was. After my scoliosis surgery, I stayed in the hospital for 5 days and was home from school for 6 weeks. If I had had the surgery years ago, I would have had to lie in a body cast for 6 months. This is an example of how far medical advances in scoliosis have come.
There are many people who might not say they were glad to have major surgery like mine, but I am one of those who would. My scoliosis surgery changed me and my life for the better, because my back is now straight and I don't have any physical restrictions.
My surgery wasn't fun at the time, but it molded me into the better and more mature person that I am today. My self-esteem is higher and I am a stronger person because of what I have been through. I am so thankful for the success of my spine surgery!
"One of the most rewarding experiences of my life"
This past spring break, I spent 2 days in Washington, D.C. that I will never forget. It was one of the most rewarding experiences of my life.
I was there to participate in the American Academy of Orthopaedic Surgeons Research Capitol Hill Days. There, I joined 30 other orthopedic patients and 45 physicians and researchers to encourage members of Congress to appropriate an additional 6.7% in funding over the previous fiscal year to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
Research Capitol Hill Days, an annual event, gives the orthopedic community, including surgeons, patients, and researchers, the opportunity to meet with U.S. senators and representatives on Capitol Hill to personally advocate for investments in the future of musculoskeletal care and increased research funding. I told my story about having scoliosis and going through the process of wearing a brace, of that not working and of having scoliosis surgery.
Dr. Polly, Dr. Peter Amadio from the Mayo Clinic in Rochester, MN, Dr. Dennis Clohisy from the University of Minnesota, my mom, and I met with Sen. Norm Coleman (R-Minn.), Rep. John Kline (R-Minn.), Sen. Herb Kohl (D-Wis.), Sen. Amy Klobuchar (D-Minn.), Rep. Jim Ramstad (R-Minn.), and Rep. Timothy Walz (D-Minn.) to personally tell my story and explain what additional funding would mean to me and other patients. It was an amazing experience. They asked me questions and the surgeons and I would answer them. They were very interested in seeing my "before and after" x-rays and pictures of my back.
Funding is critical because musculoskeletal disorders cost the United States about $400 billion annually in healthcare services and lost economic productivity. Also, one in seven Americans suffers from musculoskeletal impairment. In 2003, musculoskeletal conditions and injuries accounted for 157 million visits to physicians' offices, 15 million visits to hospital outpatient departments, and 29 million visits to emergency rooms.
It's extremely important to increase funding for orthopedic research. Further financial support will not only benefit present orthopedic patients, but more importantly will pave the way or future advancements within the musculoskeletal arena.
I hope that an increase in the budget will help with advancements in the genetic information of scoliosis. I know that researchers are very close to finding what gene scoliosis is found in. This can tell us if you will have scoliosis surgery, if the back brace will work, or if you know you will need surgery. If that is the case, other patients wouldn't have to go through the experience of wearing a back brace and just know that they will need to have the surgery. This would eliminate the need for lots of doctor visits, unnecessary x-rays and the back brace.
Since scoliosis changed my life in such a positive way, I knew I wanted to support others with the condition in some way. Going to Washington and speaking before Congress as part of Research Capitol Hill Days was a great opportunity for me to do that and a way that could have a huge impact on the lives of scoliosis patients and doctors for many years to come.
I'm also active in educating others about scoliosis at home. Since my surgery, I've talked with some of Dr. Polly's scoliosis patients and do my best to answer any questions they may have. For instance, they ask me about how I told my friends about my condition, what my scar looks and feels like, whether I can feel the titanium rods and pins, and whether others could see that I have scoliosis. I can relate to them personally and comfort them because I have experienced it. I know that I was uneasy about having the surgery and it makes me feel better that I can reduce or eliminate that for others by talking to them.
This, along with my trip to Washington, is one of the biggest contributions I feel I could make to those of us who have scoliosis, as well as to the researchers and surgeons like Dr. Polly who are doing their best to take care of us and develop new treatments for the condition.
As you read this please keep in mind that all treatment and outcome results are specific to the individual patient. Results may vary. Complications, such as infection, blood loss, or nerve damage are some of the potential adverse risks of spinal surgery. Please consult your physician for a complete list of indications, warnings, precautions, adverse events, clinical results, and other important medical information.
This story reflects one person's experience. Not every person will receive the same results. Talk to your doctor about your treatment options.