Patient Story - After Unbearable Pain, a Feeling of Hope
With DRG stimulation, Andrew Diaz is on the path out of ‘mind-boggling’ pain.
On his worst days, Andrew Diaz, 38, couldn’t leave his bed. “The pain was all-encompassing. I couldn’t think, I couldn’t see properly. It was debilitating,” he recalls.
On a scale from 1 to 10, the pain on those days rated as a solid 10. Most days, he hovered around an 8, which meant he could move around enough to meet his most basic needs, but normal daily activities were still out of the question. “There was no going to the mall or the store with my wife or kids or anything like that,” he says.
Three years before, Diaz’s ankle was crushed during a tour of duty in Afghanistan. A combination of nerve damage and prolonged use of a cast resulted in near-constant excruciating pain and a diagnosis of complex regional pain syndrome (CRPS), one of the hardest nerve disorders for doctors to understand or treat.
Reaching a Crisis
After two years of living with CRPS, Diaz reached a crisis point. He visited the office of Dr. Nandan Lad, where he was told he was a good candidate for dorsal root ganglion (DRG) stimulation, a therapy that had recently been approved for use in the United States. He didn’t take much time deciding. “It was either have the surgery, or cut my leg off,” he says.
“Before the DRG stimulator, I’d tried just about everything there was out there—hydrotherapy, hydroshock therapy, fluidotherapy, acupuncture—to try and get the pain under control.” Diaz was also taking strong narcotics that didn’t significantly lessen the pain. “All they do is take the edge off, but it would never get it to a point where I could function like a normal human being,” he remembers.
He’d even tried spinal cord stimulation (SCS), a treatment designed to block pain signals by issuing electrical impulses from an implanted battery pack to thin wires placed in the spinal column. DRG stimulation works in a similar way, but instead of targeting the spinal cord itself, the neurostimulator delivers electrical impulses to the dorsal root ganglion, a bundle of nerve cells located just outside the spinal cord.
DRG stimulators can block pain in parts of the body where spinal cord simulators aren’t as effective. They are especially useful for patients like Diaz, who haven’t had success with other treatment options. Before being approved for use in the United States, European clinical trials showed DRG stimulation to be superior to other treatments for CRPS.
Although it doesn’t “fix” damaged nerves, DRG stimulation interrupts pain signals from reaching the brain, dramatically reducing the amount of pain a patient feels.
Getting DRG stimulation is a two-step process. First, Diaz underwent surgery to implant the electrical leads. The goal of this first surgery was to determine if DRG stimulation would actually help his pain, before permanently implanting the neurostimulator. Diaz recalls feeling immediate pain relief once the technicians turned on the electric current. After that successful first step, he agreed to have a second surgery to permanently implant the battery pack.
Right away he noticed one of the key differences between DRG stimulation and spinal cord stimulation: the absence of a tingling sensation known as paresthesia. “The difference between the two was phenomenal,” he explains. “I know it’s working because I’m not in mind-boggling pain, but I don’t feel it working like the SCS. It’s definitely a big plus.”
Within a week he could move more freely, although to help his body heal he was advised not to lift anything heavier than 5 pounds for several months.
The Journey Ahead
Although Diaz says his pain did drop noticeably, it’s still there. Dr. Lad cautioned him that it can take up to a year to feel the full benefits of DRG stimulation.
These days, he typically rates the pain around a 6. “I still do a lot of things in my wheelchair,” he says, “but I can get up and move around the house a lot easier.” He controls the level of power going to the DRG stimulator with a remote control.
Diaz says he ultimately hopes to get the pain down to a 2 or 3, which would allow him to walk with a cane or a walker instead of a wheelchair. “We’re still working toward that goal,” he says, “but it takes time.”
Technicians visit frequently to listen to Diaz’s pain reports and adjust the frequencies and amplitudes of his neurostimulator to optimize the treatment—a personal touch that Diaz appreciates. “It truly is individual to each person, how you and your techs work out how you are going to run your program and what is comfortable to you,” he notes. He also commended Dr. Lad and his staff for their professionalism throughout his treatment.
If someone considering DRG stimulation asked him for advice, Diaz says, “If they’ve tried everything else, then I’d say yes, this is definitely the way to go.”
While he enjoys being free of those debilitating days that used to leave him reeling and bedbound, Diaz remains focused on getting his pain down as low as possible. “I’d sell a lot of things in life to get a 2 or a 3,” he jokes. But with time, the DRG stimulator might make that unnecessary.