DRG Tech Engages Mind and Opens Life for Device User

After years of debilitating pain, Kevin Beck went looking for a solution. And found one.

DRG Tech Engages Mind and Opens Life for Device User
Pain and Movement | Mar. 26, 2021

Kevin Beck skiing down the North Carolina mountain may not be the first visual that captures your eye in light of the surrounding natural beauty. Once you learn what it's taken for him to get here, however, you realize what you see is a bit of a wonder.

His is a story of how physical and mental toughness, a ravenous desire to know how things work and some innovative technology can combine to help give a man his life back.

These factors have largely defined how he has faced up to the many challenges tossed his way starting May 21, 1979, when he suffered a crushing injury to his right foot, through July 2018 when, after years of debilitating chronic pain, "everything got quiet," with the help of the Proclaim™ DRG Neurostimulation System. He credits this technology with, "keeping me out of a wheelchair and giving me back my life."

In the Navy
Beck was a 20-year-old jet engine mechanic on the USS Midway in 1979, 3.5 years into his Navy stint, when his team lost control of a 2200 pound piece of equipment that landed on his right foot, crushing all of its bones. While laid up in the ship's infirmary, he was counseled that he might need to have the foot removed due to the severity of the injury.

Instead, despite a foot that did not heal properly, he managed to work his way back to full duty. He fought to fulfill all his responsibilities while battling pain, excessive swelling and, perhaps most remarkably, a mandatory 5-mile run every six months for the remaining 4.5 years of his Navy career. That is pretty tough, but it's really just the start.

Back to North Carolina
Born and raised in New Bern, N.C., Beck was eager to return there to begin his post-service life. Having married his girlfriend, Judie, the younger sister of his best friend, the young couple purchased his family's recreational vehicle manufacturing business, growing it into a successful enterprise that they would end up running for 20 years.

The man who had mastered the inner workings of jet engines was now able to feed his passion for understanding and improving complex mechanical processes. He soon understood that to put a home on wheels it was necessary to master numerous disciplines, ranging from structural design and plumbing to electricity and refrigeration.

But over time, as the business flourished, Beck's health seemed headed in the opposite direction. Even as he and Judie raised their two sons and grew the family business, he was feeling the long-term effects of past military-related injuries that increasingly took their toll on his body. He would eventually undergo six knee and a dozen shoulder surgeries (including complete replacement of both shoulders).

The Real Pain Begins
Anyone who had even one such operation knows the extent of pain involved throughout the process. Multiply that by 18 procedures, and then subtract all of it because that pain barely registered with Beck. The worst was yet to come.

As his right foot had never properly healed, it became increasingly problematic over time. His toes began to curl under his feet, the pain increasing with the formation of the first neuroma between his toes. A neuroma is a tumor or mass growing from a nerve and usually consisting of nerve fibers. They can form at the site of traumatic injuries and are often extraordinarily painful.

Toes were amputated to manage the situation but that proved ineffective, and in December 2014, his right leg was amputated about eight inches below the knee. Beck was given opioids post-surgically, a time he remembers well in that he does not remember it at all. "From the time I woke up from surgery until the opioids were stopped about three weeks later, I have no memory. They just messed with my mind, fogging it up completely. I hated the feeling."

Kevin Beck, in his workshop.
Kevin Beck, in his workshop.

"An Unholy Pain"
"I didn't want the drugs anymore but the day after they were discontinued, I first experienced the phantom pain," he said. In Beck's case, he felt a "throbbing, burning pain; like a thousand wasps all stinging in a concentrated area." But phantom pain is felt where the limb no longer exists, which is why Beck called it "an unholy pain, because you know it shouldn't be there, but it is."

Believing strongly that he needed to have his wits about him to learn what was causing this excruciating situation, and how best to resolve it, he refused stronger medicines. Instead, he took to YouTube and the internet to help educate himself on this phenomenon, seeing his body as another complex machine to understand and improve.

Soon, armed with a wealth of self-education and a $5.99 Walmart door mirror, he began two weeks of "mirror therapy," in which one tries to fool the brain into believing the removed leg is still present, resolving the intense pain sensation.

Although he realized this approach does not work for all, it worked for him, leaving him largely pain-free for almost two years.

Until the neuromas formed.

"It's an entirely new kind of pain."
A well-recognized side-effect of an amputation is the possible formation of a neuroma, like the one he had experienced with his foot. However, this pea-sized bump packed an exceptional pain punch, unlike anything Beck had felt before.

"At first I thought it might be the return of the phantom pain, but it was different in type and degree. I'd done a lot of electrical work in my day and this felt like the shock you get from an outlet, except it would start at the neuroma and course through the length of my body to the base of the brain. It was like being electrocuted, like a firing off, and it would last anywhere from five seconds to a minute and a half each time.

"It felt like an eternity. And it would strike without notice anywhere from 5-20 times per day, almost every day."

Eventually, two marble-sized neuromas formed at the base of the tibia and fibula of his right leg near the amputation site. Unfortunately, although it can feel and can act like a tumor, removal of a neuroma does not eliminate the problem. If the neuroma is surgically excised, a new neuroma can form at the site of the new amputation where the nerves come together, resulting in progressive resections with no long-term resolution.

Living with Limited Options
Those who have experienced chronic pain know it is different than anything others can imagine. "One of the toughest parts of dealing with this was the uncertainty. I never knew when it would fire off or for how long. I could be sound asleep, or very active," remembered Beck. "Not knowing when it would happen again quickly became exhausting. You feel like you are just waiting to feel that pain."

The treatment choices were seemingly few. "It was basically taking the medications, which had limited impact and clouded my brain, or learn to live with it. I couldn't help but think there might be another option."

So, Kevin Beck did what Kevin Beck does: his homework.

"I went to the internet and started reading a lot and there were other technologies being discussed which held out some hope. I researched spinal stimulation, read lots of articles, watched YouTube videos of procedures and the impact they had on patients and even talked through the whole idea with my nephew, who is an M.D. I brought up the idea of neurostimulation to my neurosurgeon and after a while we agreed that I might be a good candidate," Beck recalled. "I really needed a treatment that would work for my situation because I knew this pain was ruining my life and the lives of those around me.

"The more I learned, the more optimistic I was that there was a possible treatment for me."

Kevin Beck, out for a ride.
Kevin Beck, out for a ride.

DRG Stimulation
What Beck found in his research was exactly what he was hoping for: a drug-free technology that held out hope for long-term pain relief that would return dignity and hope to his daily life. Chronic pain researchers had been looking into the role of the dorsal root ganglion (DRG), a bundle of nerves located on the perimeter of the spinal cord. Pain after nerve trauma, such as seen in Beck's case, is considered causalgia which is treated by DRG Stimulation.

The medical team chose Abbott's Proclaim™ DRG Neurostimulation System, the only FDA-approved DRG therapy to treat complex nerve pain conditions. The system is designed to deliver low-intensity electrical impulses to nerve structures. The DRG stimulation therapy involves surgically placing a stimulator that targets the dorsal root ganglion to relieve pain of the lower limbs due to CRPS I and causalgia.

The system had an extra feature that interested Beck: a hand-held iPod controller that changes the stimulation settings within prescribed limits to accommodate the person's needs. As it turned out, however, that was not a major factor in his subsequent care, for all the best reasons.

"It's not working, Judie…"
"I'm generally a positive person so I was feeling pretty good about getting the system placed, plus I was coming out of surgery the day before my birthday…," Beck remembered. "But then I was in the recovery room with my wife for a bit when I felt the neuromas firing off. I looked at her and said, 'It's not working, Judie.' I was disappointed, obviously. Then a few minutes later, the Abbott representative walks in with the doctor, carrying an Apple mobile device, and says, 'Alright, Mr. Beck, let's turn this on,' and I realized it wasn't supposed to be working yet.

"It was turned on, an adjustment was made and in my mind everything got quiet, as the pain was gone. A little while later he made another change on the pad and I have not felt that neuroma pain again. They gave me my own mobile device to make adjustments once I got home but I have never had to use that device since to adjust the settings. Not once.

"Best birthday present ever."

"That's way cool."
So what do you get for the retiree who has already received the best gift ever? Turns out, not a lot. He feels like he has so much already.

"Being in pain is exhausting and full of anxiety. It's hard on the people you care about and those who count on you.

"Judie and I have been married 41 years, have two great sons who are married to great women, three grandkids, and our dream retirement home. We hike the mountains, bike the trails, work my woodshop, ski the slopes and scuba whenever we can. I am part of the local National Ski Patrol team and I kind of love that when we are attending to a skier, they can't tell I'm an amputee. I'm just the guy who's there to help them."

Although he will never admit it, Kevin Beck is tougher than most anyone you will meet. But his fortitude in working through that pain and his desire to always keep his wits about him allowed him to continue to learn more about how the machine that is his body operates. All of that work now puts him in a position he feared he might not be at this point in his life: standing upright.

"I think the Proclaim system has given me back my life and kept me out of a wheelchair. I no longer worry about the neuromas firing off when I am doing any of these things I love. That technology has changed my life.

"That's way cool."

These are the experiences of this person. Individual experiences, symptoms, situations and results may vary.

The placement of a neurostimulation system requires surgery, which exposes patients to certain risks. Complications such as infection, swelling, bruising and possibly the loss of strength or use in an affected limb or muscle group (e.g. paralysis) are possible. Additional risks such as undesirable changes in stimulation may occur over time. Be sure to talk to your doctor about the possible risks associated with neurostimulation.

Important Safety Information

RX ONLY

BRIEF SUMMARY:

Prior to using these devices, please review the User's Manual for a complete listing of indications, contraindications, warnings, precautions, potential adverse events and directions for use.

INDICATIONS FOR USE:

Spinal column stimulation via epidural and intra-spinal lead access to the dorsal root ganglion as an aid in the management of moderate to severe chronic intractable* pain of the lower limbs in adult patients with Complex Regional Pain Syndrome (CRPS) types I and II.**

*Study subjects from the ACCURATE clinical study had failed to achieve adequate pain relief from at least two prior pharmacologic treatments from at least two different drug classes and continued their pharmacologic therapy during the clinical study.

**Please note that in 1994, a consensus group of pain medicine experts gathered by the International Association for the Study of Pain (IASP) reviewed diagnostic criteria and agreed to rename reflex sympathetic dystrophy (RSD) and causalgia, as complex regional pain syndrome (CRPS) types I and II, respectively.

CONTRAINDICATIONS:

Patients who are unable to operate the system, who are poor surgical risks, or who have failed to receive effective pain relief during trial stimulation. 

WARNING/PRECAUTIONS:

Diathermy therapy, implanted cardiac systems or other active implantable devices, magnetic resonance imaging (MRI), computed tomography (CT), electrosurgery devices, ultrasonic scanning equipment, therapeutic radiation, explosive or flammable gases, theft detectors and metal screening devices, lead movement, operation of machinery and equipment, pediatric use, pregnancy, and case damage. 

ADVERSE EFFECT:

Painful stimulation, loss of pain relief, surgical risks (e.g., paralysis). Implant Manual must be reviewed for detailed disclosure. Refer to the User's Manual for detailed indications, contraindications, warnings, precautions and potential adverse events.