Family of boy with pain syndrome leaves Stanford for new treatment
It had seemed like a dream come true.
In early April, when insurance providers finally agreed — after months of denials — to send a 14-year-old Torrance boy to a children’s hospital in Stanford for treatment of an extremely rare pain disorder, many people cheered.
That day, when the medical plane lifted off at Torrance Municipal Airport bound for Palo Alto, family members of Joseph Martinez hugged and cried, believing that this might bring back the old Joseph — the one who played video games and baseball — as opposed to the one who lay in bed 24/7, screaming, moaning and addicted to painkillers. The one who’d missed an entire year of school.
But it wasn’t to be.
After about six days, the family felt that the team of doctors in Stanford was making insufficient progress. So they pulled out of the program in mid-April. Now, they are in Texas, pinning their hopes on a podiatrist with a gadget.
Not long after leaving Stanford, they learned of the folksy doctor whose practice does not carry nearly the same prestige as the Lucile Packard Children’s Hospital in Stanford, which is among just a handful of U.S. medical centers equipped to treat children with complex regional pain syndrome, the rare disorder from which Joseph appears to be suffering.
Dr. Donald Rhodes of Corpus Christi is a podiatrist by trade, a “foot guy,” as he says. Though he is little known in the small field of pain management, the family in late April was impressed enough by the look of his methods to rent an RV for $2,700 and drive out to Texas from Torrance. (Joseph is in too much pain to sit in a car for extended periods.)
Unlike Stanford’s comprehensive 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.
Unlike the treatment at Stanford — estimated to cost $17,000 a week — Rhodes’ care is not covered by insurance. Instead, the cost is borne entirely by a $35,000 pot of donations raised mostly by Joseph’s school, St. Catherine Laboure in Torrance. A day or so before leaving for Texas, the family requested and received $15,000 from the principal. Joseph’s mother, Susan Martinez, said the family has about $5,000 left.
Complicating matters is that Susan has missed about eight weeks of work to travel with her son. Her husband, Justin Martinez, who himself suffers from spinal disease, is on disability.
As for the device, called a VECTTOR machine, it was invented by Rhodes and is designed to treat damaged nerves through electronic stimulation. It has not yet been approved by the FDA. As of Tuesday, posted on Rhodes’ website was a letter of apology about a malfunction in the device that seemed especially prevalent when used by children.
The family purchased one of these machines for $4,500. Every day, they hook Joseph up to it twice – once using their own machine at the $80-a-night hotel where they are staying, and once at the doctor’s office, which costs $100 a visit.
Despite the skepticism of experts and others back home, the family insists Joseph is finally making progress.
For the first time in months, they say, he has been able to shower without screaming in pain. He is chatty – sometimes excessively so, his mother says. He watches movies while sitting in reclining chairs. Before, he was not only bed-bound, but constantly prone, because for some reason it hurt too much to lie on his back. He now plays cards with his younger brother. But there is still a long way to go, they say.
“He’s really better than he was as Stanford – that I can tell you,” Susan said. “It should take a while to get the full benefits of this.”
The biggest negative, she says, is that Joseph is experiencing withdrawal from his heavy-duty pain medications, such as methadone, from which Rhodes is weaning him. The withdrawal has triggered excessive sweating, nausea and insomnia.
The latest twist in the Joseph Martinez story demonstrates the intense frustration that can accompany pain-related disorders. Complex regional pain syndrome (CRPS) is characterized by severe and relentless pain due to misfiring nerves, which in turn send pain signals to the brain. It afflicts between 200,000 and 1.2 million Americans, according to the Reflex Sympathetic Dystrophy Syndrome Association.
As for Rhodes, he said that although he has been treating patients with chronic pain for 19 years, he has never seen a case as severe as Joseph’s.
“He may hold the dubious honor of being the worst one,” he said.
Rhodes is not one to understate the pain felt by victims of CRPS, which he pronounces “Crips.”
“The only way I can explain it is this: You feel as if you’ve been dipped in boiling oil and lit on fire,” he said. “Joseph Martinez is in an even worse situation.
“Normally, CRPS comes from an injury to the hand or a foot, which then extends throughout the body. His came from eating bad (undercooked) chicken. So his started in the stomach and intestinal tract, then spread throughout the body. So he feels like he has drunk boiling oil that has then been lit on fire.”
Though barely a year old, the VECTTOR machine is a refined version of older devices designed by Rhodes. This is the first one he has submitted for FDA approval.
Rhodes said he entered the field of pain management almost by accident in the early 1990s, when treating – with a widely used form of electric stimulation – a patient with foot pain who also happened to have migraines.
“Before her foot pain stopped, her migraine headaches disappeared,” he said. “I had accidentally triggered an acupressure point.”
This prompted him to come up with several theories about pain management “that turned out to be true.” Rhodes began patenting ways to treat a wide range of pain disorders, all of which he says share the same underlying cause: oxidative stress. The VECTTOR machine is his eighth patent.
Rhodes says his device has provided empirical evidence that Joseph is getting better. When Joseph arrived, his fingers and toes were cold and numb from poor circulation. Now, Joseph says he can feel them again, and his circulation has improved.
Among those disappointed with the choice the Martinez family made is a prominent expert in the field, Dr. Lonnie Zeltzer, director of the pediatric pain program at Mattel Children’s Hospital at UCLA.
Back in March, Zeltzer had personally intervened, successfully cajoling the family’s health care provider, THIPA, into allowing his insurance company to cover the costs of sending Joseph to Stanford.
She works closely with the Stanford team, and said Joseph had been making progress. (Members of the Stanford team declined to comment, citing concerns over patient confidentiality.)
“(Stanford) put Joseph ahead of others who had just as much pain because I really pushed,” she said.
She fears that Joseph’s progress to date is the result of a placebo effect that is relatively common.
“I often call it a short honeymoon period,” she said. “It’s something new, that sort of builds on itself. Then everything sort of collapses when you leave.”
The family, meanwhile, was put off by what they felt was the Stanford team’s dismissal of their knowledge about what was best for Joseph. They say the doctors generally wanted to jump into intensive physical therapy without first trying to manage Joseph’s pain.
When Joseph arrived, inactivity had rendered one of his arms useless. After two days at Stanford, the second arm went limp as well.
“I thought they could have learned about how Joseph was first – how fragile he was,” his mother said.
In a six-page letter to Zeltzer – who’d long served as the family’s advocate – the father, Justin, described his frustration. He said Joseph had been sedated on the emergency air ride to Stanford, but awoke in “a tremendous amount of agony.”
“To our surprise there was no real attempt to try to make him comfortable and ease his pain,” he wrote.
“The next day Joseph was woken up by two young female therapists who … according to him were just talking back and forth to each other loudly and laughing and giggling. My wife was asked to leave the room. They began speaking loudly to Joseph, not giving him a chance to respond and refused to hear anything he had to say.”
In a response email from Zeltzer (provided to the Daily Breeze by the family), she implored them to stay the course. She suggested that their overprotective nature may be exacerbating the pain.
The Stanford team, she said, has “done this many, many times before and know what they are doing. Joseph’s pain system is turned on and the `system’ needs to reprogram itself. … The more you and your husband stay away and allow Joseph to feel that he doesn’t need your protection, the more he will develop the confidence to function.”