Erin Allday Updated 12:06 pm, Wednesday, May 28, 2014 1 of 7
- “My arm was dying on the inside. It was extremely horrifying,” says Lori Madsen about her battle with necrotizing fasciitis, or flesh-eating disease. Photo: Leah Millis, The Chronicle |
Madsen, then 51, was several days into a terrifying case of necrotizing fasciitis – also known as flesh-eating disease. Her left arm had swollen to four times its normal size, and she’d had surgery to scrape out dead tissue. The pain was unbearable.
“My arm was dying on the inside. It was extremely horrifying,” said Madsen, now 53. “It wasn’t until it was all over, and I was out of the hospital that Dr. Crew sat down with me and said, ‘Lori, we almost lost you.’ I never knew I was that sick.”
Madsen was Crew’s test subject – the first to undergo a relatively simple-sounding treatment for necrotizing fasciitis that the Daly City doctor says saved her arm and her life.
Typically, necrotizing fasciitis is treated with heavy doses of intravenous antibiotics, along with extensive surgery to remove dead tissue.
Crew’s technique keeps the antibiotics but tries to avoid the repeated surgeries. Doctors irrigate wounds from necrotizing fasciitis with a solution of hypochlorous acid that was developed by NovaBay Pharmaceuticals in Emeryville, then drain the wound with a negative-pressure vacuum apparatus.
Hypochlorous acid – which is made when chlorine is dissolved in water, but also produced naturally by the body’s immune cells – is a common ingredient in cleansing solutions, but it’s usually mixed with other agents. The NovaBay scientists say they’re able to manufacture a pure solution of the acid in saline, which renders it both stronger and safer.
The product, called NeutroPhase, is federally approved for cleaning wounds, but not for treatment of necrotizing fasciitis.
“Historically, people have tried to just cut ahead of the wound. The surgeon comes in and cuts and cuts and cuts the infection,” Crew said. “We’ve been able to come in and take control.”
Crew’s work developing the technique earned him a nomination earlier this year for an international surgical award, called the Lister Legacy Prize. In the two years since he treated Madsen, he’s used it on about 20 other patients in the Bay Area and around the world.
But the treatment has been slow to catch on, for reasons that frustrate Crew but aren’t surprising to others who treat necrotizing fasciitis. It’s an uncommon disease that’s often far advanced by the time it’s diagnosed, and doctors, most of whom rarely see cases, might not be eager to experiment.
More important than any new treatment technique is simply making more doctors familiar with necrotizing fasciitis, so that it can be diagnosed early, said Dr. Stanley Deresinski, a Stanford infectious disease specialist. Crew’s technique, he added, “is not too dissimilar from the way many wounds are handled now.”
“It looks like a pretty effective antiseptic solution that would maybe add some benefit. But I would like to see somebody do clinical trial with it,” Deresinski said. “Of course, this kind of thing, it’s next to impossible to do clinical trials because the cases are so infrequent.”
Necrotizing fasciitis is a bacterial infection that is thought to affect several thousand people in the United States annually, although Crew believes the actual number may be close to 30,000 because many cases are never diagnosed. It’s often deadly – several studies suggest about 1 in 4 people who develop it will die.
Starts with bacteriaThe disease can be caused by several types of bacteria, but A Streptococcus, the same bacterium that causes strep throat, is the most common. Necrotizing fasciitis occurs when the bacteria get into an open wound. A combination of toxins released by the bacteria and the body’s own aggressive immune reaction results in destruction of deep tissue.
Early diagnosis can be challenging when much of the damage is happening beneath the skin and is often undetectable even with imaging equipment. And the symptoms can easily be mistaken for other illnesses.
Cases usually start as a small wound that becomes obviously infected – red and swollen – very quickly. Within a day or even hours of injury, patients may feel flu-like symptoms like fatigue and fever. The most telling sign, doctors said, is pain that feels out of proportion to the size and appearance of the wound.
Treatment starts with antibiotics, which are sometimes able to fight off the infection on their own. But one of the defining signs of necrotizing fasciitis is tissue destruction that rages out of control, forcing doctors to contain it by surgically removing dead muscle and skin.
In many cases, they end up taking so much tissue that patients will later need skin grafts and reconstructive surgery to repair the external damage. Patients also can lose limbs, as in the infamous case in 2012 of a Georgia woman who lost both feet and hands to the disease.
“Usually you’re able to carve out enough of the tissue and get it under control without having to amputate the limb. But it does happen,” said Dr. Robert Rodriguez, a UCSF emergency medicine specialist who works at San Francisco General Hospital. He said the hospital sees about one case of necrotizing fasciitis a month, usually in injection drug users who become infected from using dirty needles.
“Necrotizing fasciitis is really something where the patient needs to go to the operating room,” Rodriguez said. “The dead tissue and all the bacteria and the toxins, the whole thing just has to go.”
Building his caseCrew is trying to make the case, though, that his technique can make the extensive surgical removal of dead tissue unnecessary.
Before Madsen, Crew had only treated a few cases of necrotizing fasciitis, although he’d been invested in wound care developments since 1987, when he opened the Wound Care Center at Seton. The clinic started out of his office, but has expanded dramatically since then due to a growing need for wound care services, mostly from an aging population and climbing rates of diabetes.
Now, Crew’s started to pitch himself, and his treatment for necrotizing fasciitis, around the world. He’s made himself a point of contact for patients and their families who seek help from the National Necrotizing Fasciitis Foundation, a patient advocacy group. Crew said he gets about a call a week from families who ask him to talk to doctors about his experimental treatment.
Most doctors decline his help. But Crew is slowly building a portfolio of success stories. In a four-year period before he treated Madsen, nine patients were seen at Seton Medical Center with necrotizing fasciitis; two died, and two lost a limb. But in the two years since Madsen, Crew has treated or consulted on a total of 14 cases, five in the Bay Area and the rest around the world, and none died or lost a limb.
The results often aren’t pretty. One man in Hawaii, whom Crew helped via telephone and video, ended up with scarring so bad on his left leg that he’ll probably have a limp for the rest of his life.
Hayward patientIn Hayward, Crew treated Mike Meillon, 56, who doesn’t know how he contracted necrotizing fasciitis. He fell ill in January 2013 with what he thought was the flu, but a few days later he was only getting sicker, and his groin had become very swollen. He’d somehow developed necrotizing fasciitis in his groin, and underwent care with Crew for more than a month at Seton.
His recovery has been difficult. He suffered kidney damage and receives dialysis three times a week, and he has severe nerve pain in his legs. He hasn’t been able to return to work. But doctors saved his testicles and the external damage was repairable. And he survived.
“Of course I was scared. It was a pretty delicate spot to deal with,” Meillon said. “My attitude was there’s nothing I can do about it, so just go with the program. I tried to blank it all out and just let the doctors do what they needed to do.
“I lucked out,” he added. “People lose legs, all sorts of things. You try not to think about what could have happened.”