For thirteen years, Stephen Brilliant has been living with a neurological and chronic pain disorder called reflex sympathetic dystrophy syndrome, or (RSDS). His journey with pain began after a car accident left him with an impinged nerve in his left foot. Diagnosed with tarsal tunnel, doctors decided to perform surgery to decompress the tibial nerve. Following the procedure Stephen felt more pain and worried something was wrong. His fear was confirmed a month later, when his surgeon removed his cast and his entire foot was royal blue.
His surgeon suspected he had RSDS and immediately sent him to a pain specialist, who verified the diagnosis. Not willing to waste time, Stephen and his new doctor took a proactive approach to recovery. For the next nine months, he attended physical therapy five days a week for two hours a day, and also received lumbar sympathetic blocks, injections of local anesthetic into the sympathetic nerves located in the lower back. Although Stephen had temporary pain relief and improved mobility, it was not enough. He still could not walk without a cane, his foot was blue, and the sharp throbbing sensations were intensifying. In addition, the temperature of his left foot fluctuated wildly between 46-80 degrees Fahrenheit.
His pain specialist did not give up. Over the next five years, Stephen had four epidural catheter implants and a spinal cord stimulator trial. While the stimulator did not help, each epidural catheter improved the color, temperature and flexibility of his left foot. However, these required a week-long hospital stay and, like the lumbar blocks before, the improvement did not last long.
As he searched for other therapies, Stephen began taking more medications, but with time he realized the drugs were affecting his ability to live life on his terms. Although the medications brought him periods of pain control, they caused horrific side effects, including constipation, cluster headaches, excessive sweating, leg tremors, and drastic personality changes. He did not like being “Jekyll and Hyde.” After a turbulent three-month withdrawal process, Stephen began to feel “normal” again. For the four years since then, he has controlled his pain with daily stretching, meditation, biofeedback, resting in a dark room, and playing with his three kids. Simple things like wearing cashmere socks and alternating busy and restful days also help with the hypersensitivity.
In 2001, his nieces and young children told him they did not like seeing him walk with a cane. Although he stopped using his cane mainly to pacify them, he learned an important lesson about willpower. Stephen recognized he could overcome any obstacle. While the RSDS changed the way he lives, Stephen will not allow the pain to run his life.
The inability to do what he wants when he wants is Stephen’s greatest challenge. Before his injury, he was an avid sportsman who enjoyed hiking, wrestling, softball, golf and football. While he is not able to participate in all these activities, golf is one pastime he will not give up. Although he typically completes only ten of the eighteen holes to his standard, playing is what counts. Wanting to be a present force in his kids’ lives, Stephen also coaches their sports teams.
To stay active and live with purpose, Stephen runs his own business, is a part-time adjunct professor and coordinates an RSD support group called Living with RSDS. Stephen also volunteers for the RSDSA, a national nonprofit organization dedicated to promoting public awareness and raising funds for research.
Beyond the things that keep him active, Stephen says it is the love, encouragement and support from his wife, children and extended family that truly sustain him. They have allowed him to maintain his identity and live by his rules. In turn, being a strong presence in their lives brings him happiness and fulfillment.
“I have pain regardless of what I do, so I ask myself each day if I was productive, and if the activities I did were worth it. The answer is usually yes. I will not let the pain sideline me from living every moment. I still believe that I will beat this thing.”