For Joseph Martinez, 2012 is already shaping up to be a thousand times better than 2011.
The 14-year-old Torrance resident has missed more than a year of school due to a mysterious disorder that had him writhing 24/7 in chronic pain from head to toe, rendering him bedridden and immobile.
Now, thanks largely to the generosity of South Bay donors and Daily Breeze readers, he is back to riding his bike, walking his dog, kicking a soccer ball around with his cousins and playing video games with his siblings. Soon, Joseph will be tackling his next major hurdle: returning to school.
“I can walk now, I can talk, go around, go outside, I can interact with my family — just a lot better,” he said, during a recent meeting with a reporter at a coffee shop with his parents.
Joseph’s story is an illustration of the maddening complexity and mysteriousness of complex regional pain syndrome (CRPS), which has bedeviled him and up to 1.2 million other Americans. It is also a sort of medical community David and Goliath tale, pitting the methods of an unorthodox doctor against those of an established institution.
As Joseph and his parents describe it, the pain was so severe that the sound of footsteps in the hallway outside his bedroom at home could set off an episode of moaning and crying. The situation left him unable to shower, eat, walk or even play video games without experiencing extreme pain. It also left him addicted to morphine, methadone and other pain-killing drugs prescribed to him by baffled doctors with good intentions.
After close to a year of inactivity, he temporarily lost the use of his left arm, which had atrophied and grown limp. (Now, it is back to normal.)
For a while, it appeared the Martinez family had found salvation in Lucile Packard Children’s Hospital in Stanford, widely believed to be among just a handful of U.S. medical centers equipped to treat children with complex regional pain syndrome.
But in late April, three weeks into their stay, Joseph’s parents made a decision that many found to be ill-advised: They pulled their son out of treatment, which had estimated costs of $17,000 a week that were fully covered by insurance.
The family devised a new plan that involved traveling to Texas to see a podiatrist — a foot doctor — who some have come to see as a kind of chronic-pain miracle worker. That podiatrist, Dr. Donald Rhodes, has invented a contraption that has yet to earn either the respect of the medical establishment or the approval of the FDA, but over the years has turned many patients into fervent believers. In marked contrast to the Stanford stay, insurance covered not a penny of the treatment offered by Rhodes’ little practice in Corpus Christi.
But the Martinez family would not be deterred. Further complicating their predicament was a transportation problem, as Joseph was in no condition to do anything other than lie in bed. They rented an RV, and a seven-person crew – all six immediate family members, plus Grandma and the family dog – made the pilgrimage.
Treating damaged nerves
Unlike Stanford’s treatment, Rhodes’ approach does not require a medical team of nutritionists, physical therapists, psychiatrists and pediatricians. Instead, it requires just a black box, 8 inches by 8 inches, from which protrude electrodes that attach to various parts of the body.
Called a VECTTOR machine, the device was invented by Rhodes and is designed to treat damaged nerves through electronic stimulation. Though the machine has not yet been approved by the FDA, Rhodes has told patients that he believes it soon will be.
During a brief interview, Rhodes told the Daily Breeze that Joseph might be the worst chronic-pain case he’s seen since he began treating patients with his machine nearly 20 years ago. He said he’s happy to hear that Joseph is doing better.
“It’s fun to win,” he said.
Justin and Susan Martinez credit the device for saving their son’s life. The family bought a machine for $4,500 and administered treatment twice a day – once in Rhodes’ office by morning, and once in their Texas hotel room by night.
Even though the family eventually learned how to administer the treatment themselves, the parents and Joseph stayed for 4 1/2 months. Joseph’s mother said this is because they needed Rhodes’ expertise in weaning Joseph off of the drugs to which he’d become addicted.
Triggering Joseph’s pain
Characterized by severe and relentless pain due to misfiring nerves, complex regional pain syndrome afflicts somewhere between 200,000 and 1.2 million Americans, according to the Reflex Sympathetic Dystrophy Syndrome Association. Its onset is often triggered by a minor injury, such as a sprained ankle.
In essence, the sensory system overestimates the extent of the damage and sends an inaccurate message up the spinal cord to the brain. The result, doctors say, is a level of pain – usually of the intense, burning variety – that is disproportionate to the injury.
Eventually, the condition can cause extreme swelling and atrophy to muscle and bone, leading to permanent damage.
Joseph’s ailments began sometime in September 2010, when the entire six-member family – two parents and four children – became sick from undercooked chicken. Everybody recovered except for Joseph, who seemed only to grow worse and worse.
By October, Joseph had stopped attending eighth grade at St. Catherine Laboure School in Torrance, where he once thrived. When he hadn’t returned several months later, the students organized a fundraiser to help their friend.
The Daily Breeze covered the story in March, and administrators at the school created an account to manage the donations, which totaled upward of $35,000.
At the time, the family’s struggle centered on health insurance.
Their health care provider – THIPA – refused to authorize treatment for Joseph on the grounds that the plan covered expenses only for services rendered within the network, which is limited to the South Bay. But no local medical centers were outfitted to treat children with complex regional pain syndrome. The family wanted to send Joseph to one of the handful of facilities across the nation so equipped, such as the children’s hospital at Stanford.
The donations were initially collected as a means to cover costs that were apparently going to have to be paid out of pocket. But the month of April brought a major breakthrough. Due in part to the persistent prodding of a prominent doctor in the field, Lonnie Zeltzer, director of the pediatric pain program at Mattel Children’s Hospital at UCLA, the health care provider relented and agreed to authorize treatment. Translation: Their costs at Stanford would be fully covered.
Days later, ecstatic family members stood on the runway of Torrance Municipal Airport, hugging and shedding tears of joy as a medical plane carrying Joseph took off for Stanford. But three weeks into Joseph’s stay, the parents terminated the treatment, citing fundamental disagreements they’d had with the doctors and nurses over how best to care for the boy.
They returned to Torrance, with insurance picking up the cost of flying him back. Not long after, a member of their church told the family about Rhodes, and provided a book authored by Rhodes titled “Pain Banishment, Not Pain Management.”
Inspired by the book and desperate over their son’s unremitting pain, the family rented the RV and began requesting funds from the donation pot, which administrators at St. Catherine Laboure School distributed on an incremental basis.
Four months later, the family had exhausted the funds. So in mid-August, Joseph and his father – who himself suffers from spinal disease and is on disability – went to New Mexico to stay with Justin’s mother, who is retired. Susan, meanwhile, returned to her job at Triumph Aerostructures in Hawthorne, where she specializes in inventory management. She’d been gone five months.
“I’m so blessed I still have work,” she said, adding that the company also chipped in with a generous donation. “I was gone for a long time. The job was waiting for me.”
While in New Mexico, Joseph rose from the wheelchair his grandmother had lent him. From here, his progress accelerated, his parents say. He began working out at the YMCA, riding a bicycle and walking his grandmother’s dogs.
Sometime around Halloween, the boy and his father returned to Torrance, surprising Joseph’s older sister by attending her junior ring ceremony at St. Joseph High School in Lakewood. For two months, the parents declined requests from the Daily Breeze to participate in a follow-up story, saying their son had told them he was not ready to relive the experience. But by mid-December, Joseph was game.
To the casual observer, the before-and-after picture of his condition is profound. During interviews for each of the first three stories published from March through May, it was nearly impossible to catch a glimpse of Joseph’s face, as he was always moppy-haired and lying prone in a bed – his parents said this was the only position that didn’t cause excruciating pain. When asked a question, Joseph would respond with a faint moan that only his father seemed able to decipher.
But in mid-December, Joseph had the appearance of a normal kid, sporting a Charlotte Hornets cap, trendy black-rimmed glasses, sweatshirt, jeans and skater shoes. He was soft-spoken, though, and his parents gently encouraged him to speak up when answering a reporter’s questions.
Joseph continues to grapple with sleep difficulties, a final side-effect of the drugs. The family still administers the VECTTOR machine treatment on him twice a day. (Justin, too, has begun using the machine for his ailments, and says he has made progress. So has Joseph’s grandmother in New Mexico, who suffers complications from diabetic neuropathies, a nerve disorder associated with diabetes.)
Although Joseph is up and able, much work remains, as he has missed his entire eighth-grade year.
Easing back into school
A tutor from North High School in Torrance will begin visiting the home this month, his mother said. The family has thus far held off on the tutoring sessions because of his sleeping difficulties, she said, adding that the boy’s father has done some home-schooling. (The family also pulled their youngest child, Emmanuel, out of St. Catherine Laboure School because the trauma of Joseph’s situation left him sleep-deprived. The father has been home-schooling that boy as well.)
The family plans for Joseph to start attending North High sometime in the spring, after the tutor has brought him up to speed. The parents want to send Joseph to a Catholic high school beginning next fall, perhaps Bishop Montgomery in Torrance or St. John Bosco High in Bellflower, where his older brother attended.
Zeltzer, the doctor from UCLA who’d helped the family receive full coverage for the stay at Stanford, said now that Joseph is doing better, it is imperative to get him back into school as soon as possible, perhaps by starting slow.
“It’s very, very hard for children when they’ve missed a lot of school to go back,” she said. “Most children need help with transitioning gradually, rather than going back as an all-or-nothing kind of thing.”
Although Zeltzer remains skeptical of Rhodes’ method, she said she knows from Joseph’s earlier visits to her office that his pain was real.
“Pain can become a disease in itself,” she said. “It’s stressful to be in pain. Pretty soon the pain and the stress and all of that go together. It becomes a snowball effect. There are more and more layers you have to pick apart.”
Joseph, meanwhile, said he is grateful to many.
“I’m like really, really thankful to everyone who donated money, to St. Catherine, to Dr. Rhodes,” he said, in a hushed voice. “Without them, I couldn’t have gotten better.”