Orthopaedic patients share life-changing experiences, inspiring stories

One reason for the success of Research Capitol Hill Days is the inspiring stories of the patients who participate. Here’s a closer look at four patients who were part of the 2009 advocacy teams. Their willingness to advocate for orthopaedic research funding underscores the “patient-first” commitment of their treating physicians and the importance of ongoing research to overcome musculoskeletal diseases.

Scott Chesney: Foix-Alajouanine Syndrome
A typical active teenager, Scott Chesney awoke one morning in December 1985 with numbness in his left toe. Within 48 hours, he was paralyzed from his midback (T6 vertebra) down. His doctors were baffled; no accident, injury, or trauma had occurred.

After several inconclusive tests, an MRI revealed abnormalities in Scott’s spinal cord. He was diagnosed with an arteriovenous malformation of the spinal cord that causes cell death (necrosis) in the affected regions; essentially his spine suffered a stroke. The condition, called Foix-Alajouanine syndrome (FAS), is exceptionally rare and difficult to diagnose.

Although permanently paralyzed, Mr. Chesney never allowed his physical limitations to keep him from participating in and enjoying life. A graduate of Seton Hall University, he is a professional motivational speaker who has reached more than 1 million people in 38 different countries, a highly sought-after personal empowerment coach, a columnist for several magazines, and a soon-to-be book author.

This is his second year as an advocate for musculoskeletal research funding. “It was even more important for me to attend this year, because I sustained a compression fracture in my lower spine in 2008,” Mr. Chesney explained. “There is so much research for finding cures for spinal cord injuries. But because spinal cord injury patients like me lose a significant amount of bone density with each passing year, our bodies may not be able to support us if a cure is found.”

Kimberly Kramer: Recurring giant cell tumors
In the summer of 2001, Kimberly Kramer noticed chronic soreness in her left wrist. Her physician prescribed anti-inflammatory medication, but the discomfort remained constant. When a wrist x-ray was taken, the results showed a giant cell tumor, a rare, aggressive, noncancerous growth.

That fall, Ms. Kramer had her first surgery. “The goal was to remove the giant cell tumor from my left wrist and replace the void with bone cement,” she explained. Although the use of bone cement typically eliminates recurrences, Ms. Kramer’s tumor returned within 2 years.

Six more surgeries followed to treat the recurring tumors. After Ms. Kramer’s surgeon retired from practice, she turned to Denis R. Clohisy, MD, chair of the AAOS Research Development Committee. Research had shown that the molecules that cause bone loss may also cause giant cell tumor growth. In November 2006, Ms. Kramer enrolled in a study to see whether a drug would prevent new tumors from forming. A bone biopsy and positive emission tomography scan in May 2007 confirmed the absence of tumor activity in her wrist, and no new tumors have developed.

“I had a greatly successful outcome,” Ms. Kramer explained. “Without this research study, I would have needed additional surgeries. The fact that a medication discovered in research prevents me from having additional surgeries is quite incredible to most people who hear the story, including members of Congress.”

Linda Wortman: Trauma and osteoporosis
In 1994, Linda Wortman sustained a fracture to her left wrist in a minor slip-and-fall accident and was treated in a local emergency department. After two weeks, the wrist still was extremely swollen and painful and Ms. Wortman was referred to the Mayo Clinic in Rochester, Minn. Peter Amadio, MD, an orthopaedic surgeon who had previously cared for her family, surgically reset the wrist to properly realign the bones. Within days, the swelling subsided and Ms. Wortman regained feeling in her hand.

The complexity of her fracture kept her out of work for 20 months, but she eventually made a full recovery.

At the time of her fracture, scans revealed that she had low bone mineral density (BMD) and she was diagnosed with osteopenia. Since then, doctors have monitored her BMD annually, and progression to osteoporosis has been slow.

This past December, while hiking with her husband, Ms. Wortman slipped and fell, resulting in a fragility fracture of the right wrist, which was surgically treated at the Mayo Clinic. A 12-person team placed a titanium plate and nine screws into her right distal radius. She has now almost completely recovered from her fracture and has resumed cross-country skiing, with one arm bandaged to her body.

“Having good bone health at any age is absolutely essential for prevention of osteoporosis and subsequent fractures,” she ex­plained. “Both of my fractures required surgery and resulted in loss of work.” Ms. Wortman considers support of cost-effective research essential to improve musculo­skeletal health. “Society as a whole should be afforded effective treatment options to keep Americans productive and working.”

Torie Toffelmier: Adolescent idiopathic scoliosis
Torie Toffelmier was the only girl in her sixth-grade physical education class who did not pass a scoliosis exam by the school nurse. Further examination showed that the 12-year-old had a 6º curve; within months, the curve had progressed to 18º.

Two years of wearing a TSLO (Thoracic Lumbar Sacral Orthotic) brace didn’t halt the progression of the spinal curves. At 16, with a 48º curve, Ms. Toffelmier had spinal fusion surgery of her T3-L2 vertebrae. At 12 days postsurgery, she walked 2 miles and continues to exceed expectations. She now walks daily and enjoys playing Ultimate Frisbee with her friends.

During her surgical experience, Ms. Toffelmier had her parents document her time in the hospital through photos and video. “I was hoping to encourage and befriend other scoliosis patients and let them know they are not alone,” she said.

After her surgery and during her recovery, Ms. Toffelmier posted her videos and photos online and invited the public to contact her with questions about the surgery and her experience. She answers an average of 20 e-mails a day and has contacts all over the United States and in more than 24 countries.

Ms. Toffelmier continues to encourage and support others living with scoliosis and serves as an advocate for preventive care and further research. “Speaking to the members of Congress was a wonderful experience,” she said. “Everyone was supportive of continuing musculoskeletal research. Knowing that what we did could one day advance the knowledge of musculoskeletal conditions was such an empowering feeling.”

For more information, visit the Research Capitol Hill Days online resource center at www.aaos.org/researchdays