Breast Implant Illness: What We Don’t Know Can Hurt Us Breast Implant Illness: What We Don’t Know Can Hurt Us Photo Courtesy of md.com Once Rose Finlay had finished breastfeeding her third child, she decided it was time to treat herself to a much-deserved augmentation. Looking to recapture the youthful look she enjoyed before motherhood, Finlay, a Canadian entrepreneur, asked a Playboy model friend well-versed in the art of body-perfecting, for the name of an experienced plastic surgeon. Finlay, who lives in Ontario, went in to speak to the highly recommended doctor, convinced that she’d get the natural, perky breasts she desired. Then, in July, she went under the knife. Finlay’s post-implant recovery was “pretty easy.” She was able to live life sans bra for six weeks after surgery, which according to the pretty young mom, was a welcome reprieve. “It was summer, and I was bra-free!,” she tells SWAAY. “I felt good and definitely thought I looked better.” At the end of August, Finlay was getting ready for a friend’s birthday party, eager to show off her new shape, when she suddenly collapsed into a seizure in front of her horrified husband. “It was almost like I was underwater,” says Finlay, whose alarming 1-minute attack confounded doctors. “I’ve never had a seizure before and have no history of them in my family. The doctors said it was unexplainable.” Just a few months before her frightening episode, Finlay had experienced another “unexplainable” bout of debilitating sickness, which left her barely functioning. She was tested for everything from Yellow Fever to Dengue Fever, coming up negative each time. After doing some quick internet research, Finlay decided to have the silicone mirena IUD in her uterus removed, and she says, was immediately cured of the mystery attack on her body and mind. That is, until a summer day two years later, just a few months after having silicone breast implants put in to take her from a 34B cup to a 34D cup. During the weeks that followed her seizure, Finlay says her life became unbearable. Already thin, Finlay lost an additional excessive amount of weight, experienced kidney failure and a “debilitating” painful swelling her right breast. Finlay’s business also suffered, as her memory deteriorated to a point where she couldn’t remember even what happened 24 hours before. “If you were to ask me what I had done that same day or what appointments I had coming up, there was no chance I’d remember it,” she says. After hearing from doctor after doctor that her symptoms were “thyroid-related,” or even “in her head,” Finlay began to do her own research, looking for answers. She eventually stumbled across a Facebook page that she had noticed before her procedure, yet not paid too much attention to. It was on this page that three words— Breast Implant Illness— made the lightbulb go off. The social media group, called Breast Implant Illness and Healing by Nicole, created by BII survivor, Nicole Daruda, included tens of thousands of women who were suffering nearly identically, and were willingly having their implants removed in the hopes of regaining their lives. “Unfortunately, no matter how much information comes to light about the negative health consequences of breast implants, manufacturers and plastic surgeons are still peddling breasts implants as safe,” writes Daruda on her website dedicated to overcoming BII. “Your plastic surgeon may even deny breast implants cause illness or refute your symptoms in order to avoid liability. Mine did. Plastic surgery is big business built on silicone and breast implants are their greatest source of revenue. Plastic surgeons will refuse to admit that breast implants are unsafe and will actively refute the truth in order to protect their cash cow.” [The breast implant market is worth upwards of $1.2 billion, and expected to reach $2 billion by 2020]. Struggling to be believed- whether purposefully by money-minded doctors or because there is not enough medical information yet available- is a common theme across BII sufferer stories. They share that in addition to misdiagnosis, many are told they perhaps have a mental disorder. “People think it’s in my head; I get that when I go to the doctor,” says group member, Ann Lewis. “I don’t know where else to go. I’m so thankful I found the page.” According to Macias, the removal of her silicone implant was "absolutely necessary," as it has given her life back. "Breast implants are made of nothing but chemicals," she says. Photo Courtesy of Bianca Macias Lewis, who had implants put in 35 years ago on the request of her husband, says she experiences a constant litany of symptoms; most notably memory loss, fatigue, and breast pain. “It’s depressing, the whole thing is depressing,” says Lewis, adding that she found out last year that one of her silicone implants had ruptured. “Just knowing these are in my body causing havoc.” Lewis, a mom of four from New Jersey, along with hundreds of thousands of women from around the world, are suffering from an unconfirmed illness that creates the sudden, unexplainable occurrence of head and body aches, brain fog, heart palpitations, strange rashes, panic attacks, swollen lymph nodes, chest pain, liver and kidney dysfunction, depression, and the list goes on. What else do all these women have in common?: breast implants. “I started reading everyone’s symptoms [on Nicole’s Facebook Group] and I thought ‘Oh my God’ that’s exactly what’s going on in my body and it makes perfect sense,” says Wendy McKendrick, a Colorado-based mom and massage therapist with 7-year-old implants. “I thought maybe it was a mold or fungus that had grown around my implant, but then I learned about all the chemicals they used in implants.” McKendrick, who reports feeling like “an 80-year-old with the flu” for years, has scheduled her explant surgery for next month. “I just want to feel better. Even if it’s not because of them, at least it’s out of the way. But after hearing everyone else’s stories I have a feeling I’m going to.” In the past few years after notable women like Real Housewife, Yolanda Foster, and former Playmate of the Year, Karen McDougal, made the decision to explant in the face of a potential BII diagnosis, advocacy groups have been popping up left and right with the mission to bring awareness to the untold dangers of breast implants, which The Implant Truth Survivors Committee (TITS), says “are not safe for everyone.” According to McKendrick, it’s important to remember that part of BII’s mysterious nature is that it is not a one-size-fits-all illness, and it happens in varying degrees in different women. “It’s about how your body handles the chemicals,” she says, emphasizing that the broadness of the symptoms also make it hard to diagnose. “I’m a natural health enthusiast and so I knew about BII and the complications; It wasn’t something I was blind to,” says Finlay. “But, I thought if I got sick, I’d have more time [Finlay’s symptoms began just months after getting her implants put in] or be more easily able to identify it. I also didn’t know there aren’t many doctors who can repair and correct BII, but instead are denying what’s happening. Looking back it was a dumb decision.” But What is BII, Really? Although described as “mass hysteria” by some, the nearly identical reports of pain and cognitive loss by tens of thousands of women across the globe, it’s clear something is amiss, despite the fact that the FDA-which has yet to confirm BII-does not sign off on it, And so breast implantation goes on, to the tune of about 300,000 each year in the US alone. “The best scientific evidence says breast implants are safe,” says Dr. Jon Lee, a Los Angeles-based plastic surgeon, who estimates that 75 percent of his practice involves breast-related procedures. “That being said, a connection was recently found between textured implants and a specific type of breast implant-associated lymphoma. Research into this area is ongoing and it seems that this may be associated with multiple factors including chronic bacterial contamination that may contribute to immune system activation…” Just to reiterate: despite the now known fact that textured breast implants-which are rough on the surface rather than smooth to avoid capsular contracture- can cause lymphoma, they are still on the market, and still being put inside women’s bodies, although, much less frequently, as many doctors have removed the options from the [operating] table. However, according to says Dr. Eichenberg AKA “The Breast Whisperer,” who estimates that approximately 40 percent of the procedures in his Southern California-based practice are breast related, contracting cancer from a textured implant is very rare. “Its an extremely low risk, and only associated with textured implants and not the smooth ones,” he says. “I wouldn’t rush to get your implants out though, the risk of developing BIA-ALCL (or adult large cell lymphoma) is thought to be one in 100 million, or about 3 women in the world each year. So while it is worth knowing about, you are more likely to get hit by lightning and win the lotto on the same day.” First introduced to the market in 1962 before the FDA required any proof that devices be safe, silicone breast implants have had other run-ins with safety concerns in the past. In fact, they were banned in 1992 due to a question of silicone’s potential to leak into the lymph nodes, which at least to some is an admission that the material wreak havoc on the body. Even today, it has been confirmed that traces of metals, like platinum, can be found in both silicone and saline breast implants, but according to the FDA, it’s not a big enough risk to warrant any action. “It’s true that any foreign substance can be taken up by the body and transported to lymph nodes,” says Eichenberg, regarding the possibility that silicone or trace metals could travel into the body. “We often see tattoo ink in lymph nodes after patients get tattoos on their chest or breasts. The lymph system is the body’s way of filtering out foreign stuff. Some of these women had pain or lumps in their lymph nodes which could be confused with cancer. This doesn’t happen with any implant made in the US in the last 20 years or so.” In the case of rupture, adds Lee, silicone can occasionally migrate outside of the breast. “[If an implant ruptures] ultimately the silicone can leak from the capsule and can end up in the lymph nodes and can disseminate in the body,” he says. “The health effects of this are unclear.” Lee, who says that while he continues implanting and explanting women should they desire, he believes we may be ready for some new studies on the subject. “We are always learning new things and trying to progress as we practice,” he says. “The best available scientific evidence says breast implants are safe, but it is important to keep an open mind.” For Dr. David Hopp, a Beverly Hills-based plastic surgeon, the upgrade from liquid silicone (used when implants first hit the market) to gel, has ensured the material won’t penetrate the body and cause damage. “The cohesive gel implant was developed to address the possibility that a ruptured implant may go undetected,” he says, adding that liquid silicone has been banned as filler due to its potential to cause an inflammatory allergic reaction. “The fill material will not migrate because it sticks together even if the shell is ruptured. This reduces the risk of inflammatory reaction, allergic reaction, and possible migration to a lymph node where it may cause swelling.” Another issue facing women with BII, to be sure, is the lack of medical awareness of the potential reality of the disease. After being misdiagnosed with a thyroid issue and even recommended for thyroid removal surgery, McKendrick– who has been suffering from insomnia, hair loss and weight fluctuations for the past five years– was told she had an autoimmune disorder caused by hyperthyroid issues. And Lewis, whose damaged implant has left her with a misshapen, painful breast, hasn’t had a regular breast exam in years. “They won’t even touch me,” she says. Bianca Macias, who likened her body pain to being in a car accident, says it took time for her to link her symptoms to her implants, especially because no doctor would entertain the connection. “There was nothing that tied the symptoms to my breast implants, which is why I never thought about it,” says the mom of two, who discovered the possibility through the BII Facebook page. “I read it and thought ‘I have 100 percent of these symptoms and why is no one talking about this?’” Rose Finlay [pictured] had her first and only seizure just months after getting her implants. She then began losing weight and experiencing hair and memory loss. Photo courtesy of Rose Finlay. BII On The Record Perhaps the most prominent plastic surgeon leading the crusade for BII to be taken seriously is Susan Kolb, MD. The Atlanta-based doctor, who went through her own bout of BII, routinely treats women suffering through the same issues. It is Kolb’s belief that, simply put, women are becoming ill from “silicone and chemical toxicity in silicone and biotoxicity from mold in saline.” “Science shows that silicone is an adjuvant capable of causing autoimmune disease, that mold can grow in and around saline implants, that fibromyalgia is common with ruptured implants, and that patients with certain HLA types become very ill when exposed to silicone,” Kolb has said. One such possible explanation is another unconfirmed autoimmune syndrome called ASIA Syndrome. First proposed by Israeli immunologist Yehuda Shoenfeld in 2011, patients with ASIA often suffer through constant fatigue, myalgia, arthralgia, neurologic symptoms, and cognitive impairment and/or memory loss, all also symptoms of BII. “In the past couple of years there’s been investigation into a concept called autoimmune system induced by adjuvants (ASIA syndrome), which causes fatigue and other symptoms,” says Lee, adding that more research is needed into this syndrome before any determinants about a potential association between it and breast implants can be made. “The theory is that silicone might be stimulating the immune system, but there is not enough data on the syndrome now to make a determination.” So, until then? More implants. Another issue facing women with BII, to be sure, is the lack of doctor awareness of the potential reality of the disease. Photo courtesy of Rose Finlay. The Decision to Explant After reading that many women who had taken out their implants had enjoyed a full reversal of symptoms, Finlay began considering an explant, although begrudgingly. “I wasn’t ready to pull out my $10K implants if they weren’t definitely the problem,” says Finlay, who, once hospitalized found herself without much of a choice. “It got to a point where I was told I had weeks to live, and taking out the implants was my last option.” Just one year after getting her implants put in, Finlay again went under the knife (which was covered in full thanks to Canadian healthcare), to remove them. Bolstered in part by the many accounts of women who have detoxed and whose conditions finally waned, Finlay reports experiencing a rapid improvement in her health since the explant. She is steadily gaining weight and remembering more, returning slowly to the person she once was. “It’s still a process,” she says. “But for the most part, at least cognitively, I’m almost back. I’m sleeping better, eating better, and my kidneys [which had almost completely shut down just months before] have resumed their normal function.” Despite what Finlay calls a “clear connection” between her breast implants and the unexplainable ailments she experienced, she reports that no doctor would go on the record with this suggestion. (Author’s note: while writing this piece, I must say that of the two dozen doctors I reached out to for comment for this story, I was sent terse “nos” from at least 20 of them once they heard the subject matter). The remainder were mostly nonchalant about possible implant-related risks and on recent reports that claim the number of explants are increasing. “For every pair I have taken out I have put in 100 pairs in women where it increased their confidence and self-esteem,” says Eichenberg. “There are probably a thousand positive stories for every negative one. I don’t think there is anything wrong with taking them out if they are bothering someone, but it’s not the norm.” For Lee, as well as the handful of plastic surgeons who would speak on the record about the subject, the input was similar. Most reiterated the fact that silicone is an extremely safe, inert substance that is most likely not the cause of any toxicity in women. After Real Housewife, Yolanda Foster, and former Playmate of the Year, Karen McDougal, made the decision to explant, BII sufferers are choosing to explant and detox to regain control of their lives. Photo courtesy of Bianca Macias. Since having her implants taken out, Rose Finlay has steadily gained weight and regained her cognitive strength. Photo courtesy of Rose Finlay. “The FDA and the American Society of Plastic Surgeons are all in agreement that there is no link between silicone breast implants and connective tissue disease,” says Lee. “This is based on multiple large, well-controlled studies.” Throughout the conversations, most doctors agreed that unverified self-diagnoses can stir psychological responses by women in need of a different kind of care. Many also warned that the vagueness and scope of BII’s symptoms can, in fact, be attributed to a number of factors. “I have had several women who were experiencing these symptoms and sometimes their symptoms resolved after taking out their implants,” reveals Eichenberg. “We think that the anxiety and worry that the implants could be having an effect on them is the cause and that once the implants are out they have less to worry about.” New York-based plastic surgeon Dr. David Cangello also believes the psychological effects of explant may be the reason women are claiming to feel better. “Some women who have complained of “breast implant illness” symptoms who have had their breast implants removed, do claim to have resolution of symptoms afterward,” says Cangello, who estimates 30 percent of his practice consists of breast implant surgery. “While people may quickly run to the conclusion that this is proof that implants cause illness, unfortunately it is not. More information has to be gathered to show a direct cause and effect. I do feel as a plastic surgeon that it is important to take the concerns of women who experience symptoms related to “breast implant illness” seriously and offer them implant removal if they so desire.” For Macias, who underwent her explant surgery on March 15 to counteract the disastrous effects of what she believes is BII, explanting wasn’t a choice. After suffering for years, she reports that the removal of her silicone implant has given her life back. “It’s been a few weeks now and I haven’t had any anxiety whatsoever, no panic attacks, my eyebrows are growing back in,” says Macias. Despite still struggling with brain fog since her removal surgery, Macias says there have also been emotional effects. “I’ll be honest, I’m having a hard time leaving my home, I feel so unattractive, I hate to admit that I guess my fake breast did give me a boost of confidence and now it’s gone,” Macias tells SWAAY. “I need to learn how to re-love myself, and how to accept myself as I am. I went on a hike a few days ago and I was filled with so many emotions when I realized I could finally take deep breaths, feel my lungs filling up with clean air, and feel my heart pumping, which I hadn’t felt in such a long time.” “The explant surgery was worth it, I know it’s going to take some time to fully recover. I wish doctors would speak on Breast Implant Illness to women before getting implants. If one of the seven plastic surgeons I’ve seen would have warned me I would have never implanted and eight years of my life would have never been lost.” -Bianca Macias Drowning in Debt While a new pair of breast implants will run you between $4K and $6K, explant surgery is typically upwards of $10K, leaving many women unable to move forward. Unlike Canada, women in the states don’t have the option of leveraging insurance towards their explants, as the surgery is considered linked to a cosmetic procedure, rather than a medical necessity, even in the case of rupture. “I’ve already refinanced my home and I have no more equity to refinance,” says Lewis, the mom of four college-age children. “I’ve looked into Care Credit but the interest is very high. We are a one income family and my husband is a teacher. I can’t even be on disability because I was a stay at home mom. I can’t go out and get a job because I’m so sick.” Despite being approved for $5,000 worth of assistance by Alabama-based The Explant Financial Assistance Program, Lewis was quick to find out there is no funding left to be allocated to help. She was put on a waiting list, and told to hang tight. “Due to the ever-increasing number of applications that qualify for payment, the line for Payment Authorization gets longer,” reads the Program’s website. “This span of time was originally a few weeks, and is now at a month or so; but due to the volume of approved applications, we anticipate that it will increase to a few months.” Lewis isn’t holding her breath. Her kids have taken to the internet, and made a Gofundme account to help pay for their mom’s surgery, but Lewis says she just feels lost. “A lot of the women in the group are telling me not to wait and that my life isn’t worth being in debt, but with four kids and $20K in loans, there’s just no way,” she says. “It just scares the crap out of me.” The Manufacturers Changing the laws, to be sure, is certainly an undercurrent in Daruda’s quest in uniting women with BIIl. She encourages members of her group to sue manufacturers, making them more accountable for the potential risks associated with implants. “Proper disclosure of the realities and the health consequences of breast implants is not occurring and, in fact, most of the medical community is outright lying about the safety of silicone and quoting dubious science created by breast implant manufacturers that covers up the truth about their toxic products,” she says. “Government organizations such as the FDA and Health Canada are doing nothing to protect women from these corporations making toxic products and in fact seem to be colluding and covering it up.” The three major producers of breast implants in America: Allergan, Mentor, and Sientra, all of whom SWAAY reached out to for comment [only Mentor responded], swear by the safety of their products. However, according to the ladies in the Facebook group, there are some shady dealings going on, and while many of these companies promise to pitch in a few thousand dollars for the explant surgery, they also require that the implants be returned to them. Although alarming for BII sufferers desperate for answers, Dr. Eichenberg tells SWAAY that this exchange is simply normal practice. “The implant companies almost always want the implants back. they are constantly studying them to see if there is some way to make them better so that no woman will ever have a rupture or other problem,” explains Eichenberg. “I think every implant company offers some financial assistance coverage at the time that women get the implants, but like most warranties, it’s usually not worth it because there is such a tiny percentage of the 300,000 breast augmentations every year that have a problem.” The doctors and representatives from Mentor, whose MemoryGel implants are available in both smooth and textured iterations-remind potential patients that implants are not permanent. In fact, most should be replaced every 10 years. “As with any surgical procedure, it is important for patients to understand the benefits and potential risks when deciding to have breast implant surgery and that breast implants are not lifetime devices,” says the Mentor spokesperson. “There are certain known complications and adverse outcomes associated with breast implants, the most common of which are capsular contracture, reoperation, implant removal, and rupture or deflation of the implant. Part of the success of any surgery is the follow-up between a doctor and patient.” A difficult follow-up process when one half of the doctor-patient relationship doesn’t believe the other, reminds Lewis, regarding the uphill battle she currently faces to get the implants out of her body. “Every doctor has said ‘it’s nothing, it’s nothing.’ No doctors have ever said ‘it’s the silicone,’” says Lewis. “I’m lost. Who’s listening? The only people who are listening to me are my immediate family and the 40,000 women on the site.” *Name has been changed You’ll Also Love… » 6 Healthy & Helpful Ways To Handle Stress » Foods To Eat When Fighting Chronic Illness Belisa Silva Belisa is an editor with more than 10 years of experience. Prior to SWAAY, she worked as freelance writer, covering lifestyle, fashion and beauty industries. Belisa was a Market Editor at Women's Wear Daily for five years, where she interviewed rockstar business women like Drew Barrymore, Jennifer Lopez and Iman. Belisa also contributes to Cosmetic Executive Women, where she highlights female executives making an impact in the beauty industry.