For longer than she can remember, Hauser Lake, Wash., resident Cindy Crow had symptoms ranging from joint pain and daily headaches to an autoimmune thyroid disorder.
Medical experts over the years couldn't pinpoint why. But Crow, who had a breast augmentation surgery in 1995, found a potential clue earlier this year while watching a segment on "Today."
On that TV show, women talked about breast implant illness and a long list of ailments—mainly autoimmune-related—and most which Crow shared.
"I hadn't even heard of breast implant illness, like so many women I guess, until this year," said Crow, 59. "For years, I've struggled and suffered, so I started doing my research at that point in time."
In March, the Food and Drug Administration held a two-day hearing about the safety of breast implants. It included testimony about breast implant illness as well as a potential link between certain textured implants and a rare form of cancer called anaplastic large cell lymphoma.
Breast implants are medical devices implanted under breast tissue or under chest muscle to augment breast size or to rebuild the breast after a mastectomy or other damage, the FDA says.
Two types of breast implants are approved for sale in the U.S., one filled with saline and the other with silicone gel. Both have a silicone outer shell. They vary in size, shell thickness, shell surface texture and shape, the FDA says.
In a recent follow-up to the hearings, the FDA issued a statement saying it won't take action now to ban devices but will increase efforts to collect and disseminate information about potential risks.
Regarding breast implant illness, the agency said it "doesn't have definitive evidence demonstrating breast implants cause these symptoms," but added that the evidence supports "that some women experience systemic symptoms that may resolve when their breast implants are removed."
Several plastic surgeons at the FDA hearing urged caution, saying that implants generally are safe and an important option for women who want breast augmentation or reconstruction after breast cancer surgery, news reports said. Roughly 400,000 women a year in the U.S. get implants, including about 100,000 for reconstruction after mastectomies.
The nonprofit National Center for Health Research cited evidence of at least some women developing autoimmune diseases as a result of their breast implants, and that removing them improves health.
During her research, Crow joined a growing online advocacy community with thousands of women sharing concerns about breast implant illness, generally describing issues that include joint and muscle pain, allergies, vision problems and fatigue.
Many of these women are choosing to have their implant devices removed, as well as the adjoining body tissue called "capsules" that naturally form around implants.
On April 22, Crow underwent what is called an explant surgery, performed by a local plastic surgeon, to remove both the implants and capsules. Three weeks later, she said it feels like her body is still detoxing, but there's improvement.
"I did a full en bloc and capsulectomy," Crow said. "That means they remove the capsule all in one piece so that nothing leaks out or nothing is left behind."
She has heard that her body might have to detox one month for every year she had implants.
"Every morning, I wake up and feel like I have low-grade flu. At first, I felt fabulous after the surgery. I will say I have so much more energy. I don't require as much sleep."
Spokane Valley plastic surgeon Dr. Kaiulani Morimoto said she believes women who tell her about illness and autoimmune symptoms from breast implants. She's also witnessed the post-operative benefits when those women have them removed.
"I've had too many people get better after removing their implants to chalk it off to something that's in their minds," Morimoto said. "Some of them feel better in recovery.
"They even look different, even in their faces, they don't look so inflamed and tired. I've had family members come in and thank me for giving them back their mom, their wife, their daughter. It's not just the patients saying they're better; it's other people noticing changes in them."
In recent months at her practice, the number of scheduled procedures to remove breast implants has eclipsed the total amount of surgeries for breast augmentation with implants. Many seeking removal had implants done years earlier by different surgeons.
"It seems like just lately, I'd say in past couple of months, I've seen more and more," Morimoto added. "I'd say we have one-third wanting implants and two-third wanting them out."
In the past, she did see some patients who wanted implants removed because of symptoms, but it wasn't then labeled breast implant illness. "Before they were kind of trickling in, and now daily I'm seeing numbers of them."
Patients sometimes had mysterious rashes, joint pains, vision problems that couldn't be corrected and other concerns. Some women tell her they have a hard time breathing because of the capsules, which sometimes can limit expansion of the ribs.
Many women pay out-of-pocket—roughly $7,000—for an en bloc and capsulectomy, because some insurance companies consider it part of original cosmetic surgery, unless it's for prior cancer reasons.
Another regional explant patient, Lisanne Bingman of Clarkston, was suffering from chronic joint pain and was diagnosed with lupus, an autoimmune disease. She had received breast implants in 2007. In November, the 58-year-old came to Spokane to have them removed.
Her health has since improved, she said, and post-surgery lab results back that.
"I'm in clinical remission now," Bingman said. "All my labs are coming back perfect. The biggest thing I've noticed is I have no neck or shoulder pain at all anymore, and the food sensitivities I had are getting better."
Morimoto said she still puts a number of implants in for women who don't experience any problems, "but it's just for whatever reason, certain women are sensitive to it."
She thinks it's likely from their body's reaction to the implant, "because normally when you put an implant in anyone, the body will protect itself from the implant by putting a capsule around it. There is already a natural response. Why some people have this like exaggerated response, I'm not sure."
Morimoto said both the saline and silicone implants are made out of the same silicone shell.
"I probably have more women with the saline implants getting them taken out than silicone, but still, it's the shell that the body sees or reacts to, not what's inside of it," she said.
Women who choose explants aren't necessarily flat-chested afterward. Morimoto said it depends on how much breast tissue remains and the skin's elasticity so that tissues retract back to a breast shape.
"Sometimes, we'll do a lift at the same time," she said.
For recovery, Morimoto puts drains in the breast area where removal occurred to allow drainage of residual fluids for several days, then patients return to have the drains removed. That might be within five days for a healthy patient, but it tends to go longer for those with breast implant illness, she said.
"I'm not sure why. For patients with breast implant illness, those drains tend to stay in 10 to 14 days."
Bingman said she hopes the recent attention by the FDA and women advocacy groups will help educate women before they consider surgeries. A Facebook group she follows has close to 70,000 members, and many use the slogan "the heal is real," regarding implant removal.
She first discovered the possible link a year ago in August when her sister urged her to watch a Netflix documentary, "The Bleeding Edge," about potential risks of some medical devices.
"My sister had asked me, 'Do you think your implants could be causing your problems?' " Bingman said. Her health issues hadn't surfaced until 2013, so she'd never thought about that before.
"I told my husband that if there is a remote possibility that this autoimmune disease is connected to having implants, I don't want them."
©2019 The Spokesman-Review (Spokane, Wash.)
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