"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."

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.