This Chronic Pain Patient's Quality of Life Improved with Neurostimulation

Ed Levien Would Like Others to Know About the Option Without Delay
Ed Levien with grandson Rafael in 2013

On his way to Bermuda for a honeymoon, Bethesda, MD. resident  Ed Levien didn’t know his return trip would be on a Med-Vac with a broken arm and severed nerve. Even as his fracture healed, he didn’t know the injury would lead to chronic pain that would persist for 12 years until he learned about neuromodulation through word of mouth. 



His symptoms of complex regional pain syndrome (CRPS) diminished within six months of his spinal cord stimulator implant in November 2011.



“The entire field is so promising for so many people,” Levien said. “The changes are so dramatic, we need more people to be able to ask, ‘Is this right for me?’ . . . All this stuff is just getting better, and the doctors are getting better, and the science is getting better.” 



It took him a long time to get over his outrage that he was in chronic pain and had not heard about the option, he added, because his providers – including at the physical therapy clinic where he underwent almost daily rehabilitation for almost two years – were not aware of the option.



He was surprised when he needed a new primary care practitioner and ran into physicians who had not heard about spinal cord stimulation (SCS), but wanted to know more.



A research review published in the peer-review journal Neuromodulation: Research at the Neural Interface in March/April 2013 concludes that spinal cord stimulation should be considered earlier than a last-resort therapy for CRPS.



“Particularly as the population ages, the need is only going to get greater.” Levien said. “With the economy the way it is, people can no longer retire; therapies such as this are making those longer lives bearable – instead of just existing, they’re actually functional.” 



Levien learned about SCS after his best friend’s wife found relief for another chronic pain condition through the therapy. Later, Levien learned he need not have driven an hour to use her provider because there were neuromodulation providers in his community. Even one floor down from his orthopedic surgeon’s offices at a local hospital, he said, was a physician who is board-certified in pain management and anesthesiology – but the doctor was only listed as an anesthesiologist on the hospital directory, so although Levien was in chronic pain, he did not know pain management was offered.



SCS is a minimally invasive FDA-approved therapy that applies mild electrical stimulation to nerves in the spinal column to minimize pain signals traveling to the brain. In common use to treat chronic pain of the back or limbs since the 1980s, the therapy may be considered a sort of “pain pacemaker” that delivers targeted stimulation through slender electrical leads implanted under the skin, above the covering of the spinal column. The placement depends on the area treated. In appropriately selected patients, SCS often replaces pain sensations in the affected area with a mild tingling called paresthesia. 



Patients first have a temporary trial of about a week or more, and if pain symptoms decrease by at least 50 percent, may then have a pacemaker-like pulse generator implanted to power the device. SCS users receive a set of stimulation programs, tailored to them, and a handheld controller to switch between programs, modulate power, and turn the device on or off.



Levien appreciates that spinal cord stimulation is a non-pharmacological approach that works without drugs. Prior to his third orthopedic surgery Levien realized he had become addicted to his narcotic painkiller. He mentioned to a pharmacist he didn’t want to tell the hospital that he felt like he had the flu, worrying they’d postpone his operation. When the pharmacist learned Levien had stopped taking the painkiller, he said he believed Levien was in withdrawal, and advised him to resume the medication and then slowly taper off. “It took me well over six months to wean myself off of that stuff,” Levien commented.



Meanwhile, he spent the entire time with his affected arm always wrapped, and despite steady physical therapy, regained nearly all his strength but did not overcome the pain. On a bad pain day, he said, “I was in so much pain, breathing was a chore.” 



Being left-handed, he had to learn to compensate for limited use of his left arm and hand. The hand is now smaller than his right, he said, and appears to him to also be more wrinkled – but he can use it to write again, and finds he has needed less intense stimulation over time. 



A former gymnast, competitive swimmer and SCUBA instructor, Levien had earned a living as a writer and marketing strategist. He also trains dogs to aid wounded vets, but was careful not to hold a leash on the affected side of his body since just being pulled by the dog could be taxing for days later.



In his case, Levien believes his CRPS is associated with regrowth of his severed radial nerve, and after initially having no use of his arm, slowly regained control, starting with being able to twitch his thumb – for which he was thankful since his doctors told him he would never use his arm again.



CRPS occurs rarely; the chronic pain condition may develop about 1 percent of the time after a fracture or injury, or occasionally, from no obvious cause. 



When his older daughter had two little girls during his years in chronic pain, he was only allowed to hold his newborn granddaughters while sitting, in case he might accidentally drop them. When his younger daughter got married, he said he could not use the traditional style of walking her to alter with her right hand resting on his left arm. However, 18 months after his SCS implant, she gave birth to his first grandson, Rafael, and he is proud of a photo that shows him holding the child in his left arm, wearing a watch on his left wrist and wedding band on his left ring finger again.



“My pain is gone so significantly,” he remarked, “I don’t even think about my arm anymore. “My life has been transformed so much, it’s truly amazing.”



Ed Levien would like to give special thanks to his physician Zachary Levine, MD, who implanted his neurostimulation system and referred him to the International Neuromodulation Society.

Related content:

red diamond Spinal Cord Stimulation Explanation -- for Patients, Referrers, and Caregivers -- from the International Neuromodulation Society

red diamond Experts Address How Soon to Offer Spinal Cord Stimulation in Complex Regional Pain Syndrome

red diamond Brief Overview of Complex Regional Pain Syndrome

(Please note: This information should not be used as a substitute for medical treatment and advice. Always consult a medical professional about any health-related questions or concerns.)

Photo caption: Ed Levien with grandson Rafael in 2013 - photo courtesy Ed Levien

Reviewed Sept. 17, 2013

Web content on www.neuromodulation.com is reviewed by medical experts from the International Neuromodulation Society editorial web team

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Last Updated on Friday, August 18, 2017 03:39 PM