Former radio personality Radene Marie Cook rues ‘fail first’ treatment plans for chronic pain
For decades, Radene Marie Cook had two complimentary careers: she was a professional actress, dancer and singer in southern California, and she enjoyed a 16-year run as an on-air radio personality, including time spent as an "on the spot" news and traffic airborne reporter for KFWB in Los Angeles. In January of 2000, she won two broadcast awards for her work.
But on March 16, 2000, all that changed. While working, her aircraft was hit by a "microburst," a wind shear event known for being especially violent and often deadly. "Through some miracle, in those violent four and a half seconds, we escaped hitting the ground, but not the damage of a crash," Cook said. "The midair collision with the winds moving straight down at nearly 200 miles per hour was like the force of an 18-wheeler slamming into a Soap Box Derby car," she explained. Her injuries were extensive.
Placed in the workers’ compensation system, Cook said all of her care was "determined not by myself or my doctors, but by what benefits could be listed behind my case number." The immediate list of injuries was a concussion, five-level whiplash and lumbar injuries from L3 down through the coccyx. "But where my injuries started was nothing compared to where I ended up after four-plus years of ‘treatment’ under the bureaucracy of workers’ comp and ‘fail first’ treatment policies that continued to injure me despite protests," Cook said.
Because of the immediate damage to her lumbar spine, Cook could not sit. Though her assigned spinal doctor recommended surgery to stabilize a fissure found at L5-S1 in November of 2000, surgery was not allowed until she "failed" at physical therapy, she says. Although her doctor assured workers’ comp staff that Cook had indeed "failed" at physical therapy and warned that if stabilization was not given, untreatable nerve damage may occur, the workers’ comp system still did not approve further treatment until July of 2001. That was when, upon seeing her pain-filled, disabled state, her previous boss called and demanded that the doctor-recommended treatment be given whether she could return to work or not. Surgery was finally approved but was too late; there were damaged nerves that the stabilization surgery could not fix. Two more surgeries failed to provide relief as well.
"In the four years I was under treatment through workers’ compensation insurance, which adhered to ‘fail first’ policies rigorously, more damage than healing occurred," Cook said. The dural lining of her spinal cord was punctured twice; she had 79 separate needle punctures to her back from epidural steroid injections and nerve blocks. (Though ineffective after the first injection, she had to continue to "fail" at the injections or she would receive no other treatment, she said, "Not even the small amount of Tylenol 4 with codeine that actually did help dull the shriek of pain to some degree.")
Cook said her frustration grew with the lack of control she had over her care. "I was never told where the line between ‘still ineffective’ and ‘fail’ might be, but I did know emphatically that such an invisible line existed at their discretion, not mine or my doctor’s."
Over time, her injuries deteriorated, and she received diagnoses of adhesive arachnoiditis in her low back and neck; central pain syndrome; complex regional pain syndrome-type II; cauda equina syndrome; and severe epidural fibrosis. "The pain was constant and hellishly brutal," Cook said. "I was substantially undermedicated. At least twice a month, my body began slipping into physical shock from the pain, according to my primary care physician."
Fed up, Cook, her husband and family decided to leave the workers’ comp system, which they say was literally killing her by denying her doctor-recommended pain treatment. Luckily, they were able to obtain private insurance.
A new pain doctor with expertise in intractable pain told Radene that the physical damage done to her nerves and the systemic damage throughout her body had created one more diagnosis to add to her list, an umbrella for the others: cardiac adrenal pain syndrome. "This condition is rare in that the person must have severe and complex pain signals coursing through their body continuously and to such a degree that the heart and hormone levels are put in danger," Cook said. "Without treatment for the pain itself, the heart can arrest and the brain will stroke in a short sustained time. That was why I had been slipping into shock so often," she explained. A multi-modal treatment regimen with high-dose opioids as its base finally began to offer her some relief.
Now, six and a half years after changing to the new pain specialist, Cook’s pain is still very present, but controlled. "My health in all areas has returned to a level I never thought possible again before treatment." she said. "I am still disabled and must take things slowly, but within my limitations I have made a new life as an artist and have won national and international awards in art focusing on pain issues."
Cook also is a freelance writer and a pain advocate, volunteering as the national spokesperson and pain advocate co-chair for IPPU: Intractable Pain Patients United. She’s found the group Chronic Intractable Pain and You to be a helpful, supportive resource for her and others with complex or severe pain.
"Although I am still in pain, my life is improving significantly," Cook said. "It is because I have access to the opioid treatment appropriate for me and because of the individualized treatment plan worked out between me and my doctor that I can again have a quality of life that overshadows the pain — something I could not have when left to ‘fail first’ treatment plans."
Gina Libby strives to improve pain medication legislation
At 42 years old, Gina Libby has lived with chronic pain for more than 20 years. Yet, it hasn’t stopped her from making an impact; she’s on the front lines of pain advocacy, using her experience to influence healthcare policy and teach others.
As a young girl, Libby was diagnosed with severe scoliosis, or curvature of the spine, that caused significant pain. As an athlete, she fought through it to continue playing sports in college until the pain became too much. At 20, she had a long spinal fusion, an operation that permanently connected all the thoracic vertebrae and most of the lumbar vertebrae into one solid structure in her body.
For more than 15 years, surgery gave her some improvement, but she still lived with nagging, achy muscle pain. Then, about five years ago, she began to experience extreme nerve pain shooting down her legs, impairing her ability to walk and perform her job as a senior food and drug investigator for the state of California. She scheduled an outpatient procedure — spinal decompression surgery — meant to alleviate her nerve pain.
Instead of relief, surgical complications turned her world upside down. She experienced neurological impairment of both legs and two dropped feet; Libby was left unable to walk. She entered rehabilitation immediately.
"The most interesting thing about that whole experience," Libby said, "is that by the grace of God, for about the first two and a half months, I had absolutely no pain. So here I was cruising around on my walker, happy as a clam because I wasn’t in pain." The realization that being on a walker was so much less disabling than life with chronic pain, even though some people pitied the woman on a walker, "was a rude awakening to me."
Now Libby uses walking poles that many people mistake for athletic equipment; strangers frequently joke around with her by asking if she’s headed out to go skiing.
"Nobody would ask that if they knew I was just out of surgery and had lost my ability to walk," she said.
She loves cheerfully teaching people about the benefits of the equipment.
"I don’t know that there’s any aspect of my life that hasn’t been affected by pain," Libby said. The lives of her husband and daughter — as well as those of her parents and in-laws, who help her as much as they can — have also been altered.
But she’s not bitter. "What I’ve learned most is that I am … and you are … more than pain. And we’re more than our bodies," Libby said. "Getting in touch with that, having the strength and support to discover and be willing to love the ‘new’ you is a huge learning point. It’s about acceptance, although it’s counterintuitive to accept pain." She has learned numerous coping skills through counseling and cognitive behavioral therapy. "I can’t go climbing in Yosemite like I did when I was 19," she said. "But I like who I am more, the person I’ve become in terms of my attitude and my compassion for others. For many of the years I had pain, I didn’t like me." Now she channels her feelings about life with chronic pain toward efforts that help others.
"This experience of pain is humbling, to the point of realizing we’re all in this together. When one suffers, we all suffer," Libby said. She currently serves on the advisory councils to the Northern California Pain Initiative and the Southern California Cancer Pain Initiative; with these groups, her focus is on improving pain care legislation.
"The personal connection that occurs through advocacy is so rewarding and inspiring, because I hear of people almost daily that deal with things so much worse than mine," she said. "The fact that those people are still up and fighting and making a go of it … that’s something I want to be a part of."
Libby said an unbalanced public perspective on chronic pain — especially the focus on a minority of patients who abuse prescription medications — has to shift. Without that shift, she says, millions will continue to be undertreated. At the same time, she explained that many healthcare providers aren’t taught pain treatment or management during school, so those prescribers unintentionally exacerbate the problem by undermedicating, overmedicating or just plain incorrectly medicating patients.
The lack of education about chronic pain — its origins, treatment approaches and long-term impacts — puts healthcare providers at a disadvantage. And the public — also lacking knowledge — is less than understanding about chronic pain, Gina said. "People in pain are playing catch-up with those suffering from other conditions," she said. "The tragedies we live with are not death tragedies, but they’re still loss. People don’t understand how powerful it is."
Libby said we desperately need a cultural shift toward acceptance of chronic pain as a recognized health condition. She pointed out that we don’t have a medical code for the treatment of chronic pain, which impacts 700 million people in the United States. Until healthcare providers are reimbursed for their work — and pain treatment is taught in schools — how can we expect the public to catch up and support those in pain? As she put it: "We’re all screaming for help, and we’re wondering who’s listening."
"Pain takes away independence," Libby said. Those in pain depend hugely on the support of family, friends and health care providers to make their way in the world. Being a chronic pain advocate, she says, has helped her feel stronger, more self-driven. "We advocates, we’re a big family," she said. "This work has gone a long way toward rebuilding my self-esteem and sense of self-worth. It’s saved my life."
She said it’s possible for people in pain to choose a new way to live, in spite of their experience. "You won’t necessarily have the life you’ve had before, but you can define a beautiful new you, a strong you, that can emerge. It’s like the phoenix rising."
Chronic pain sufferer Dennis Kinch pens book to encourage pain community
Dennis Kinch lives by the motto, "Do what you can, when you can." These seven words have carried him through hardships and triumphs. In 2005-2006, they even spearheaded his crusade to walk the entire Route 66 to raise awareness about chronic pain.
In 10 months, Dennis walked 2,400 mi. with a wheelbarrow containing his personal possessions. He slept in a tent and visited pain clinics and hospitals along the way to discuss pain with others. Extraordinarily, Dennis accomplished this long trek while dealing with his own pain.
His chronic back pain began more than two decades ago after twisting his back moving a freezer. Then in 2001, doctors diagnosed him with ankylosing spondylitis and Paget’s disease. Ankylosing spondylitis is a form of arthritis causing inflammation in the spinal joints. Paget’s disease involves abnormal bone destruction and regrowth. Although the diseases have begun to attack his internal organs the past three years, he has been able to put Type 2 diabetes, prostate cancer and kidney disease in remission.
All movement hurts. He feels pain along his entire spine from his hips up to his eyes. His thoracic spine is covered with metastatic lesions that are weakening the bone, and the interior of the bone is malformed, affecting nerves and muscles. Each day, Dennis deals with electrical sensations, numbness and burning, pulsing, throbbing, tingling, stinging agony. The only areas free of pain are his face and knees.
Unfortunately, there are no known treatments or cures for these rare diseases. Instead, Dennis has had to learn to adapt and find therapies that bring him some relief. Since he cannot lie on his back or sides without experiencing great pain and fatigue. Dennis’s recliner is very important to his overall wellness. Sitting is now the only way his body can fully relax.
Medications also have helped bring him some pain relief, though it took him nearly a decade to obtain the correct ones. Dennis takes a nerve medication to relieve the spinal pain, a central nervous system analgesic for the radiating and outlying pain and an opioid for residual pain. This allows him to be productive and feel more comfortable; he believes his life would be impossible to maneuver without taking these carefully monitored and properly dosed medications.
He has become proficient at distinguishing between damaging and non-damaging pain. He knows which movements, like lifting heavy objects, cause permanent damage. Dennis also has learned how to handle non-damaging pain so that he can participate in life. While most would think Dennis looks normal and can communicate effortlessly, everything from making a phone call to doing household chores causes him delayed onset muscle spasms, or DOMS. These horrific spasms leave him completely debilitated for various lengths of time.
Today, Dennis is housebound and nearly bedridden in the advanced end-stages of both conditions. Art, drawing, wanting and music help him stay busy. Breathing, stretchIng and relaxation are now exercises that keep him physically and mentally strong.
For the first 14 years of his pain journey, Dennis experienced many negative feelings, like anger, fear, anxiety and dental. He lost his wife, job and home. It took time for him to accept pain, and what he calls "the positive side of the pain cycle." Pain ultimately led Dennis to a better place. He met the physical therapist that showed him how to hold on to the "big picture." Everything that was sacred to him he had previously taken for granted: pain made him grateful for the gifts In his life.
Believing in a power larger than himself gives him the power to accept his fate and forgive himself and others for wrongs done. By letting go, he has a newfound strength in mind, body, emotion and spirit. He walked when he medically should not have been able to walk. He shared his story and became victorious over his condition. "Chronic pain has given me the opportunity to complete the greatest challenge of my life: staying genuinely happy despite constant pain."
Understanding that life is always filled with some amount of pain, Dennis wrote a book that chronicles his experiences on the road and explains the Pain Cycle and Pain Amplifier. His wish for others with pain is to believe in the power within. Believe you can move forward enjoying life and being happy again. Recognize that pain is a journey or an adventure; it will have ups and downs, but it is how we finish that truly matters.
In his opinion, the greatest problem facing the pain community is the lack of validation. He feels non-validation is actually just fear from the giver to the receiver. Pain needs to be better understood so others can empathize. On the other side, Dennis also thinks those with pain need to look at the reasons why no one validates pain and what we as a community can do to change those perceptions. Pain should not have to cost us meaningful relationships, financial security or proper care.
While he has worked with large organizations in the past during his Route 66 walk, Dennis has gained the most strength from the pain community. He felt support that only others who have undergone similar experiences could give.
This is why Dennis likes grassroots organizations run by those with pain, such as U.S. Pain Foundation, Artists in Transitions and Heroes of Healing. Not only are these groups free to join, but they also offer hope, an outlet and valuable resources.
Dennis proves that there are no limits to what we can accomplish. At 55 years, he is an inspiration, still making every day count. "I guess I see myself as ever-changing and always adapting. While I wish I had the wisdom I do now back in 2001, I am just so grateful to be where I am today. My time is limited, but my legacy hopefully will live on forever."
For more on Dennis’ journey, visit his website at WalkForHealing.weebly.com