Shower water hitting Emily Blake’s leg can be excruciating, as can the feel of a soft bedsheet brushing against her lower body. Most of the time, nothing at all has to be touching her for searing pain to interrupt her concentration in the daytime or keep her awake at night. The Fort Wayne 16-year-old has been diagnosed with complex regional pain syndrome, or CRPS, an oft misdiagnosed and still not fully understood condition that causes neuropathic pain or a malfunction in the response of nerve fibers.As is the case for many with CRPS, Blake’s pain began after what was seemingly a mild injury to a limb. In her case, it was a left foot sprain incurred in 2010. X-rays and other tests have been negative, but the pain is worsening and now spreading, not uncommon for people with CRPS.
“I’m never not in pain,” Blake said, giving a vivid description of sensation: “I feel like I’m wrapped in barbed wire.” Once a champion swimmer and diver who placed first in the city and 11th in the state in butterfly, Blake can no longer tolerate the feel of the pool water. She’s undergone six nerve blocks, seen seven specialists, had many weeks of physical therapy and been prescribed an increasing number of medications. Some treatments helped, but not for the long haul. Her most recent nerve blocks provided minimal relief for only a very short time.
So in their quest to find help for Blake, and at the recommendation of pediatric pain specialist Dr. James Tolley at Riley Hospital for Children in Indianapolis, Her parents, Beth and Jerrod Blake, are turning to a more unconventional treatment called scrambler therapy. In the non-invasive treatment, electrical signals are sent along nerve fibers that pass through the areas where the individual feels the pain. The process reboots or retrains the brain by sending a no-pain signal along those fibers rather than the signal the brain has been interpreting as pain.Tolley referred Blake to Dr. Michael J. Cooney at Calmare Therapy NJ USA in Rutherford, N.J. She will be treated in March at the clinic, which specializes in scrambler therapy. Calmare means "to soothe" or "to ease" in Italian. The Calmare is the only U.S. patented scrambler machine with FDA clearance.
Transcutaneous (skin-penetrating) electrical nerve stimulators (TENS) and scrambler therapy are both used for pain relief but work differently, said Cooney, who will administer the outpatient therapy to Blake for 10 daily sessions lasting about 35 minutes each. TENS works by sending short electrical shocks to temporarily block the pain. The electrodes are applied directly on the painful spot. Scrambler therapy, on the other hand, works by sending signals along the nerve fibers up to the brain. It is thought that the type of fibers in the brain that receive the new electrical messages allow the message to be changed.
“We’re telling the brain, ‘There’s no pain here; there’s no pain here,’ over and over,” Cooney explained, noting the electrodes are placed near but not directly on the pain site. The machine, which looks similar to an electrocardiogram machine, uses 16 different algorithms. “It’s constantly sending signals along the nerve fiber, but the stimulus is constantly being changed. No one sequence is being repeated, so it doesn’t allow the nerve fibers to get used to the effect.” Elimination of pain often lasts for months; sometimes it’s gone for good, Cooney said.
For someone with CRPS, it is thought the pain signal doesn’t shut off even when the injury has healed. Cooney, who is a chiropractor, likens it to phantom limb pain in which an amputee continues to feel pain in the missing arm or leg but points out that researchers disagree on the etiology of the condition, he said.
Despite a growing body of evidence showing the efficacy of scrambler therapy, it is not covered by Medicare and only rarely covered by private insurers. Yet leading medical centers such as the Mayo Clinic and Johns Hopkins are using scrambler therapy to treat chemotherapy-induced neuropathy in cancer patients. Both institutions are participating in clinical trials with cancer patients.
Dr. Charles Loprinzi is leading Mayo’s research and said in a 2016 interview for HemOnc Today, a journal for cancer treatment specialists, “I do believe that scrambler therapy works. This contention is based on the knowledge that the majority of the reports in the literature are positive and also the personal experience I have observed in many patients, including seeing dramatic reductions of symptoms in some patients that did not derive similar benefit from previous treatment approaches.”
The Blakes’ insurance company has refused to cover the $3,000 therapy cost. Beth said they cannot let that deter them, and Emily’s brother, Carson, 14, is doing his part to help. He started a Go Fund Me page to help cover treatment and housing costs for Emily’s two-week stay in New Jersey.
Great hope and many prayers of the Blakes are resting on the treatment. As Beth talks about CRPS’ impact on Emily, a tone of desperation is heard in her voice.
“Parents are supposed to protect and help their children. When they have CRPS there often is nothing you can do to help,” Beth said. “Now that her CRPS is over her whole body, there are times that I can’t even hug Emily because it hurts too bad for me to touch her. It’s such a helpless feeling.”
Jennifer L. Boen is a freelance writer in Fort Wayne who writes frequently about health and medicine. This column is the personal opinion of the writer and does not necessarily reflect the views or opinion of The News-Sentinel.
Emily Blake, 16, of Fort Wayne has a chronic, worsening condition called complex regional pain syndrome (CRPS). She has been referred by her doctor at Riley Hospital for Children to a New Jersey clinic for a treatment called Calmare scrambler therapy. The treatment is not available locally and is not covered by the family’s health insurance. Emily’s brother, Carson, 14, started a Go Fund Me page to help with treatment and housing costs for Emily’s two-week stay in March in New Jersey. Visit www.gofundme.com/blakeemily to learn more about Emily and CRPS and to donate.