Cally—Eden Prairie, MN
When Cally was diagnosed with scoliosis in the 6th grade, she embarked on a journey that included successful scoliosis surgery, as well as a new role as an orthopaedic patient advocate.
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.
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 ten-inch titanium rods and nineteen titanium screws and clamps. I have a 13-inch scar down the middle of my back and a three-inch scar from where they needed to take bone graft.
Most fifteen-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 five days and was home from school for six weeks. If I had had the surgery years ago, I would have had to lie in a body cast for six 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!
This past spring break, I spent two days in Washington, DC 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 orthopaedic 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 orthopaedic 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 Senator Norm Coleman (R-MN), Representative John Kline (R-MN), Senator Herb Kohl (D-WI), Senator Amy Klobuchar (D-MN), Representative Jim Ramstad (R-MN) and Representative Timothy Walz (D-MN) 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 U.S. 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 orthopaedic research. Further financial support will not only benefit present orthopaedic 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.
A Conversation With Cally
Because of her experience with scoliosis and scoliosis surgery, Cally addresses some "Frequently Asked Questions" she often fields from the scoliosis patients she's counseled:
How did you feel when you learned you had scoliosis?
I was surprised at first. I did not know much about scoliosis. I was unsure how it would feel or how other people would react when they found out. I was nervous.
How did you feel when Dr. Polly said that you needed surgery?
I was nervous and a little scared. I was not surprised because I knew it was getting worse even while wearing the brace. I knew it would be best for me in the long run.
What did your friends say when you told them you had scoliosis?
They just asked me questions about it and wanted to know what it felt like but they did not treat me any differently.
What does your scar look and feel like?
My scar down my back is 13 inches long and it is now very thin. My bone graft scar is about 3 inches and is wider. I don't feel them at all. I have to be careful about putting extra suntan lotion on my back because the scars can burn easily. A lot of people don't even notice my back scar.
Can you feel your instrumentation? Can others see it?
I can't feel it at all. No one can see it. I have been through lots of airports and it does not set off the alarms when I go through security. A lot of people ask me if it does.
What did your back feel like during your recovery?
It felt stiff, but I was really good about staying on a very strict schedule of taking my pain medication. Sometimes it felt itchy while it was healing.
For those who are still wearing a brace, what are some tips for finding clothes/clothing styles that both fit over the brace and look good?
I bought my clothes a little bigger so they would fit over the brace and I wore men's t-shirts underneath the brace so I didn't get sores on my skin. I wore lots of t-shirts and sweatshirts.
What's the most important advice you could give someone facing scoliosis surgery?
You should be open-minded and have a positive attitude about the surgery. It was helpful for me to have my bed moved down to the main level so I didn't have to go up and down stairs. I was also by a TV and always knew what was happening when I was downstairs! Also, I would suggest that you make a schedule for taking all of the medications. This will assure that you are always comfortable and avoid pain.
After reading 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.