Dave Jones was just 11 years old when his left foot began to twist painfully inward. His parents thought the problem was caused by skateboarding—their son's favorite sport. But when Dave's foot didn't improve with rest, the Jones family embarked on a search for answers.
Now in his 30s, Dave saw a series of specialists over the next few years, but they failed to diagnose his problem. The Placentia resident also underwent several unnecessary foot surgeries. Meanwhile, his condition grew worse. His left foot became permanently fixed in an abnormal position, which prevented him from putting his heel on the ground and walking normally.
Finally, Dave had a stroke of luck. He was referred to Daniel Truong, M.D., an internationally known neurologist and movement disorders specialist at the Parkinson's and Movement Disorder Institute at Orange Coast Medical Center. "Dr. Truong diagnosed me immediately," Dave says. "It turned out my problem was a movement disorder called dystonia."
"People with dystonia experience involuntary muscle contractions that twist the body into painful postures," says Dr. Truong, author of the recently published book, "Living Well With Dystonia." "Although there is no cure, symptoms can often be controlled with medications and other treatments."
In Dave's case, dystonia medications were nothing short of miraculous, sending his disease into almost complete remission. But seven years ago, the drugs stopped working, and Dave's symptoms quickly grew worse. Soon, the vital young man, then in his 20s, was confined to a wheelchair. That's when Dr. Truong suggested that Dave consider a procedure called deep brain stimulation (DBS), which has been used to treat movement disorders such as essential tremor and Parkinson's disease since the mid- 1990s. Used for dystonia since 2003, DBS uses surgically implanted electrodes to regulate abnormal activity in the part of the brain that controls muscle contractions.
"Think of DBS as a 'brain pacemaker,'" says Devin K. Binder, M.D., Ph.D., a fellowship-trained neurosurgeon at Orange Coast Medical Center and leading authority on DBS. "Electrodes placed deep in the brain are connected to a battery-operated generator, which is implanted under the collarbone, just like a pacemaker for the heart. The generator is individually adjusted for each patient to achieve the best control of symptoms. DBS isn't a cure for dystonia and other movement disorders, but for many patients, it can improve life dramatically."
Dave's surgery took place in late 2005. Assisted by MRI scans and brain-mapping technology, the surgical team located the area in the brain creating his symptoms. After the electrode was threaded into the right location, Dave was awakened and asked to perform various tasks to ensure that the electrode was placed correctly. A few days later, in a separate procedure, the generator was positioned under his collarbone.
Often, it takes time to find the best settings for each patient. But as Dave tells it, "They turned on the battery and bam! I was walking down the hallway. I was ready to go hiking. All of a sudden, I'm out here in this new world, this new life."
The adjustment to that new life hasn't always been easy, but Dave has no regrets. "Everything changed the day I met Dr. Truong. No one has ever treated me like he has. He's the best I've ever met. I've been in his care for 20 years, and he's kept me going."
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