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."
Resources
INvisible Project
Chronic Intractable Pain and You
Intractable Pain Patients United