"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."