Pain comes in different guises, but however it shows up, it is always an unwelcome guest. “I had this distinct, weird pain in my groin and hip area,” Randy Snow recalls, “from my knees to my belly button, deep into the bones of the hip on one side. It was like an electric pain on the surface of the other side and it always caused me to pull my head down. The pain was burning, aching and nagging, and it was always taking from me, always demanding of me.”
The pain was ever-present, doing to Snow what the wind does to the ocean, generating huge waves of pain sometimes and minor ripples of discomfort at other times. Either way, it was always there and never the result of injury or activity. It just was.
Mechanical pain — the kind experienced in bones, joints or muscles and normally caused by overuse and exacerbated by movement — usually responds well to anti-inflammatory drugs such as ibuprofen, as well as narcotics, and will cease when the damage heals or the source of the strain is removed. However, Snow’s nemesis wasn’t mechanical pain, but an entirely different animal called neuropathic pain, a type that many SCI survivors know all too well.
The source of neuropathic pain is damage to the spinal cord that causes the brain to interpret normal sensation signals as painful ones. Often described as sharp, burning, stabbing, squeezing, crushing, electric or pins and needles, this type of pain can be present from the time of injury or begin many years later. It can resemble anything from broken ribs or pinched skin to more severe pain. It’s usually always there — sharp, aching, crushing or squeezing — wearing the person down. Movement often has nothing to do with it. Unlike mechanical pain, neuropathic pain, unremitting and ever-worsening, is often unaffected by drugs. Some laboratory research is now investigating the source of such pain at both the molecular and cellular level and why it is so unresponsive to drugs.
Like Snow, most say their pain, while varying in intensity, is constant and unrelenting. Relief is only temporary and usually fleeting. Many people become progressively more desperate and resort to a cornucopia of remedies. Some go the prescription drug route, using anti-depressives, anti-psychotics, epilepsy medications (all either alone or in combinations), or they attempt to escape the pain through alcohol or the fog of illegal drugs. Others try surgery, most notably the DREZ (dorsal root entry zone) procedure — pioneered at Duke University in the ’70s — that burns the nerves responsible for sensations at their entry point into the spinal cord. Guidelines for that surgery demand that the pain occur at or below the level of injury, is constant (though it may vary in intensity) and develops within the first year of injury.
Snow’s story is textbook, his would-be remedies a clinic in the futile and ineffective.
“I tried everything,” he says. “Massage, meditation, acupuncture, stretching, as much as 2,000-3,000 milligrams of Advil a day, you name it. I used alcohol and drugs until they became a big problem. I even contemplated surgery and went through all the pre-op preliminaries at Duke, but then backed out because the success rates just weren’t good enough. Early on I could just bear down and take it; that attitude actually helped me with athletics, but over time my pain threshold lowered. I never slept well unless it was drug induced. The pain was like a bad relationship, always taking from me. After 20 to 25 years, it really began to affect my quality of life.”
Finding Pain Generators
The Duke DREZ procedure that Snow contemplated simply burned the sensory nerves two levels above the original injury and one level below it. This procedure was eventually undertaken and improved upon by Craig Hospital’s Dr. Robert Edgar, now retired, and Dr. Scott Falci. Looking for ways to direct the DREZ surgery, Edgar began using a neurometer to measure electrical activity in nerves and found distinct differences in frequencies that indicated the source of the pain. His findings led to a refined procedure and significantly improved outcomes. After training with Edgar, Falci began to extensively map these signals to determine exactly where the pain was being generated in the cord of each patient.
“The pre-op testing tells us where to look,” Falci explains. “Once the cord is exposed in surgery, we can hook up electrodes, measure responses, record activity and analyze for painful and non-painful responses. The difference between pain and normal signals is quite clear, and we use that information to direct our surgery. We can now knock out the pain 85 percent of the time.”
You’d expect most surgeons to place heavy emphasis on that 85 percent success rate, but Falci seems more concerned with the 15 percent of surgeries that don’t work. In talking with me, he mentioned his surgical failures three or four times more often than his successes. Falci asks people to describe their pain, its intensity and frequency, during an extensive initial interview, and he asks what they’ve done to manage it so far. “I try to talk them out of surgery. Most people I see are taking massive doses of Neurontin, narcotics, or anti-seizure or anti-depressant medication and are spending most of their time just dealing with the pain. I tell them they could lose all sensation where we destroy nerves, lose all muscle sparing and some motor function — including bowel, bladder and sexual function — and maybe end up in the 15 percent who still have the pain. If the pain stays and they lose function, they don’t like me very much.”
Those undeterred by that worst-case scenario then undergo extensive pre-op testing with electrodes placed externally in strategic locations to stimulate nerve cells and help locate abnormal pain signals. Once the locations are identified and marked, it’s on to the lengthy and grueling surgery. With the electrodes back in place, Falci performs a laminectomy to expose the cord, dissects any scar tissue from around the injury site and begins to record where he suspects the pain is being generated. This mapping and recording process is the most time-consuming aspect of the surgery. Each suspected root entry zone must be stimulated, read and confirmed to be transmitting an abnormal signal. Once identified, the final destination of the culprit nerves are destroyed about 2 millimeters deep in the sensory relay centers within the spinal cord, then re-checked to verify that they are no longer receiving pain signals.
After 12 years of this surgery, Scott Falci is still learning, and some of the knowledge he’s acquired is both remarkable and surprising.
“I’ve spent years doing this somatical mapping to locate which nerves carry pain from specific areas,” he says, “and the pain mapping reveals a very different picture than that for sensation.”
Which means what?
“Our map tells us that pain signals can circumvent travel through the spinal cord by traveling outside the cord via the sympathetic nervous system, which sends signals to the heart, blood vessels, adrenal glands, etc. We’ve destroyed nerves below the level of injury of people whose cords are totally transected and we’ve knocked out pain. That should be impossible.”
When I met Randy Snow in May 2005, two years after undergoing the procedure, he spoke glowingly of both his surgery and of Falci.
“The pain’s 100 percent gone, it’s unbelievable. This is like a whole new life.”
That “whole new life” didn’t come without a cost, and it certainly didn’t come overnight. This is major surgery that exposes a significant section of the cord; the post-operative period is usually both painful and lengthy. For starters, people are flat in bed for five days post-surgery, primarily to avoid development of any spinal fluid leaks. Then they’re in the hospital for an additional five to 10 days. Snow headed home 10 days after surgery.
“I got on a plane alone with 60 staples in my back after just coming out of 10 days of heavy-duty drugs. I don’t know what I was thinking. It’s like a whole new injury, but if anyone knows how to adapt, it’s us. I knew it was going to be very painful, sort of like a divorce. The hope that something better was on the other side made it worth the risk.”
A whole new injury indeed. Snow recalls taking a full two months before regaining the confidence necessary to transfer into a car and physically venture out into the world. He spent six months erasing the surgery from his short-term memory. He also lost some function and sensation: from L2 to T12 in motor and from L1to T10 in sensation.
“Gosh, it was hard,” he says now.
Three years post-surgery he continues to occasionally have bad dreams of the pain returning. That kind of anxiety is quite common, says Falci.
“Usually people know almost immediately if the surgery has been a success,” Falci says, “and if it has, most are elated. But it can be very unnerving when pain that’s been around for 20 to 25 years is suddenly gone. It’s been a bad friend and they’re fearful of it coming back. Sometimes the pain has been so overwhelming — the focus of life, actually — and when we knock it out, it may be the first time people really have to focus mainly on being in a chair,” he explains. “Some are dealing with paralysis for the first time.”
After so many years of constant pain, the pain nerves in the brain may continue to fire for several weeks before stopping. And in those whose pain persists despite surgery, Falci suspects the pain patterns may be permanently imprinted at the brain level.
Preparation is Key
Snow had reached the point where he felt he had little to lose and much to gain by risking surgery. Even then he found the decision to go forward an agonizing one. His advice for others contemplating the surgery? Do lots of homework.
He began with a personal inventory: “I know myself and knew I couldn’t take it any longer. I did a lot of research and I liked the odds. Getting past that rule we all have about not losing any more function was very significant. But I made the commitment, and once I did, I began to control everything I could, training as if it were an athletic event: I gained weight, got strong, set up transportation and rented a scooter, alerted the airlines regarding power equipment. Then I employed the self-fulfilling psychology of success and began asking myself, ‘What if it works?’ I developed a prayer group for energy. I invested in belief.”
Others spoke of finding people who have had the surgery and learning as much as possible from them, or of having an advocate on hand for pre- and post-surgery, preferably someone with medical knowledge. Some prepared emotionally for both a long recovery and the possibility of a bad outcome.
Most people come to Scott Falci as a last resort. They’ve tried everything, and, desperate, they seek him out because all else has failed. In doing his best to talk them out of surgery, Falci downplays the hero status Snow and other satisfied customers give him.
“I don’t like to oversell this,” says Falci. “Everyone comes in saying ‘Life can’t get any worse.’ I tell them it can, and they need to be prepared for that. If they end up in that 15 percent, well I’ve just made their lives worse. The pinnacle of my career would be not having to do this surgery.”
Phantom of Lost Limbs
By Roxanne Furlong
After a sip of champagne or wine, Jim Martinson’s toes start to tingle. When the barometric pressure drops, he feels an electrical storm throughout his legs. Thing is, Martinson is a double amputee. As a sergeant in Vietnam, a landmine detonated and blew him into the air, tore off his right leg and severed his left leg behind the knee. Doctors amputated both legs mid-thigh, but since waking from surgery, July 4, 1968, he’s had sensation and pain in both legs.
This phantom pain can be daily excruciating or intermittent tingling, and is the same neuropathic pain that those with SCI describe as burning, shooting or stinging pain. In amputees, phantom pain or sensation manifests as a feeling that a limb is still there.
“I remember specifically when I’d lie on my stomach. It felt like my legs were behind me, up in the air. I’d have to look back to see if my legs were actually there or not,” Martinson says. “The phantom pain is when you have shooters, hot pokers. It targets areas like a big toe or heel or ankle; mine is usually in the feet.”
Martinson, of Puyallup, Wash., experiences phantom pain less frequently than he used to, but explains how the pain will shoot through the right leg for an entire day and work its way out the left leg the next day. He says it’s like getting zapped with an electrical wire, and nothing will make it stop, not even rubbing the end of his stump. “Sometimes it hits so hard I feel like I’m having a heart attack,” he says.
Martinson says there’s “no rhyme or reason” to when phantom pain occurs. He now gets a tingling sensation that drives him nuts and has tried everything he can think of to stop the pain: massage, hot baths, cold baths, Advil, aspirin, prescription pain relievers; it sometimes helps to apply pressure or massage his sacroiliac.
“I just figure it’s part of what goes on with me. If they lasted weeklong, I’d have surgery,” he says. “Knock on wood, the episodes are getting further and further apart. I used to get them every other week — now it’s about once a month.”
The Interactive Phantom
Martinson says his phantom pains sometimes start with just the mention of the subject. “Maybe there’s a little bit in your head. I’ve had doctors tell me it was a figment of my imagination.” But the same thing happened to 37-year-old Pam Hammersly, of Crystal River, Fla., a single amputee as a result of a motorcycle accident when she was 18. During our conversation, Hammersly several times said her stump tingled and was “shivering with awareness” with just the mention of phantom pain. Sounds mystical, but it makes sense, according to Dr. Howard T. Katz, physiatrist and owner of Gulf States Physical Medicine and Rehabilitation, in Jackson, Miss.
“Every single person with an amputation has some phantom sensation, and very commonly they have pain,” explains Katz, who is also board certified in SCI medicine. “That pain is usually described as something to do with fire, biting fire ants, wasp stings or a burning feeling, which is consistent with neuropathic or neurogenic pain — any pain from nerves.”
Martin L. Buckner, certified prosthetist/orthotist of Buckner Labs, also of Jackson, says some people think that phantom pain/sensation is activated by electromagnetic fields, kind of like the vibrations you feel if you place your hand close to a neon sign. Buckner says there is a type of prosthesis that has an electrical sensing device that measures electrical activity on the outside of a limb in order to activate the artificial limb. In other words, those nerves are still sending signals.
“There’s constant information being sent from the periphery or the extremity to the brain. In return, the brain is constantly sending information back,” Katz says. “When that transmission is stopped because the nerve is cut, then the information is no longer getting to the brain and the brain starts to perceive that as a painful situation. We don’t know exactly what causes this, but we believe it has to do with the fact that nerves are not made to be severed.”
Stress, certain foods, alcohol and unrelieved pressure from sitting or lying too long in the same position can stimulate phantom pain. To relieve phantom pain or sensations, Katz prescribes anti-seizure drugs or anti-depressants. “They modulate the electricity,” he says, adding that he sees best results with anti-seizure meds taken at bedtime. He also says people experience good results with relaxation techniques, hypnosis or holistic medicines.
“When someone comes to me with phantom pain, I first look for a neuroma,” Katz explains. “Neuromas usually occur in traumatic amputations — usually in war — rather than surgical amputations.” A neuroma is a bundle of nerves or benign tumor formed where the nerve is cut. It is extremely painful but can be removed and a smoother cut created in its place, or medicine can eliminate the pain.
Hammersly says she had “screaming horrific pain” the first few years after her accident. She uses guided visualization to let her mind relax to relieve the pain, which she says is a gentle awareness day-to-day but horrible during her menstrual cycle.
“Now I take Neurontin and the phantom is not as angry as it used to be,” she says. “It helps if I press against my wheelchair and put pressure with a towel on my stump — it affects the phantom. The phantom is very interactive!”