Leslie Hamilton Perry was first diagnosed with Scoliosis at age 13. Within a year, in 1973, she had her first surgery, where surgeons inserted Harrington Rods to help straighten her spine. This solution kept her relatively functional, until 2005, when she started bending forward. Over the next year, she found the condition steadily worsening, until she was fully bent over.
In 2011, she was diagnosed with flatback, which is a condition in which the lower spine loses some of its normal curvature, which can shift the center of gravity too far forward in the body. The result is that the patient can have trouble standing upward. It can also cause chronic pain and the loss of ability to do daily tasks. After her diagnosis, she had rod removal surgery, followed by a third surgery in the same year. Neither surgery helped. After living in pain for a decade, she found revision specialist Dr. Matthew Geck and traveled from her home in Mississippi to Austin, Texas for a grueling 13 hour surgery. Afterward, she was finally standing upright and felt like she had her life back. Later, she followed up with a 5th surgery to extend the fusion further up, to T2.
In an attempt to help others like her, Leslie joined forces with Carolyn, another patient of Dr. Geck’s, to form a Flatback support group on Facebook. The group already has close to 500 members, but Leslie and Carolyn want to continue to spread the word so they can help others through support, information, and encouragement. When asked how she managed to cope for so long with constant discomfort and difficulty, Leslie said she did so by taking it one day at a time. She waited 6 years to get a diagnosis and to find the right Doctor to help her. I think we can all learn from her the value of never giving up.
Leslie’s greatest piece of advice is that “you are your own best advocate. If you think something is wrong, it probably is. Get several opinions on treatment options, and when surgery is the only option left, find a surgeon who specializes in Flatback Syndrome revision/ adult Scoliosis.” I would add that you should also go and join her facebook group. We can all be better off if we reach out and seek help from those who have gone before us. Thank-you to Leslie for sharing her story!