"We feel our pain through the keys on this board, and we get goose bumps because we know what emotions are truly behind every note. We silicone sisters are here for one another. Please keep signing on."
--Subscriber to a national breast-implant computer bulletin board
Teresa Butler recalls what she felt when a doctor identified the probable culprit of her medical woes--her silicone breast implants.
"The words that come to mind are 'disbelief,' 'confusion,' 'fear' and then 'anger,'" she says.
Within days, she rechanneled her rage into a quest for information.
The 32-year-old Phoenix mother of two went to the Phoenix Public Library and scanned the medical computer for the latest data on the subject. She devoured books and articles. She grilled her doctor about how implants could have caused her chronic fatigue, joint inflammation and other ills.
For Butler and thousands like her around the nation, self-education about their breast implants had become a painfully necessary process. Women have used the traditional routes of local support groups, seminars and word of mouth. But many others have taken advantage of the fact that the information highway is no longer a one-lane road.
A key moment in the raising of Teresa Butler's consciousness came last Christmas, after her husband, Reid, gave her the information-gathering computer service Prodigy. These days, Butler regularly signs on to a Prodigy bulletin board titled "Breast Implants" and becomes part of a new kind of community.
"You talk like you'd talk to someone in your family, sometimes even more so," Butler says of the board. "For many women, it's their only form of support. That's sad in a way, but at least they have somewhere to turn, especially as the legal battles move along."
Breast-implant litigation is at a critical juncture, with the recent news of a likely $3.7 billion settlement in a widely watched class-action lawsuit.
The controversy has also become a political battleground on which the medical establishment has sided with the manufacturers in waging war against those who say breast implants are dangerous. But the women affected seem to be growing in numbers and visibility.
More than 600 people, many of them ill, angry women, recently packed a Scottsdale resort banquet room for a breast-implant seminar titled "Education for Life." Teresa Butler attended the seminar with her husband. Not a strident person by nature, she has become radicalized as she has learned more:
"I know that if Rogaine were causing serious problems in men, it would have been treated far differently than we've been treated."
Not being taken seriously by the medical establishment, the women have found strength in each other. What that has meant is that women with breast-implant-related problems have helped their own cause more than in any other mass-product-liability case in memory. Asbestos, the Dalkon Shield and malfunctioning automobiles come to mind.
"No network has ever existed among victims like this one," says Kelly McDonald, a Phoenix attorney whose firm has more than 100 breast-implant clients. "With these women, it's not just, 'I'm outraged.' It's, 'This is what's wrong with me and this is probably why.' And it's not just emotion talking. They're talking about facts. What's been happening on the legal and medical fronts is due in considerable part to the women who are ill."
"This bulletin board kept me sane when I found out that I have silicone poisoning. . . . At that time, I didn't know, personally, a single soul with whom to share my fears or ask advice."
--From the bulletin board
Teresa Butler's cyberspace neighbors are there for her day and night, linked by modems, telephone lines and a computer bulletin board. Their reason for embracing the board is the same: information.
But, like Butler, these disembodied friends--BBers, they call themselves--aren't get-a-life computer nerds. Those on Butler's bulletin board include a professional clown named Polka Dot, a woman who buys breast implants for hospitals in the Northwest, a worried mother of three from New York City and a sympathetic husband.
"You really get to know these people," Butler says. "They say personal things that they probably haven't been able to tell their loved ones. And the information part can be incredibly helpful."
A majority of the BBers are convinced that breast implants are "perky time bombs"--as one BBer called them--that have caused their various medical problems. Some women are healthy, but wonder if they should get the implants removed before problems arise.
Others who are contemplating having their breasts surgically enlarged ask fellow BBers if saline implants really are safer than the older silicone-gel models. (You're playing Russian roulette" is a typical response.)
Information collecting is just one reason for the popularity of the computer bulletin boards. The boards are also safe places to vent and to find companionship.
"All these medical problems are not helping me to be a happy clown," the woman who calls herself Polka Dot wrote a few weeks ago. "My hubby is pretty good, but I don't think he understands what I go through with this. Thanks for letting me cry on the BB. Don't worry, I will be all right. I have good makeup to paint on a big smile."
Some use the board to beat on themselves for having gotten implants in the first place.
"You have a lot of company in the blaming-yourself department," one woman recently told another BBer. "All I can tell you is---don't! As far as I'm concerned, our decision to have implants was fundamentally no different than deciding to wear makeup, pluck our eyebrows or cover the gray. . . . It was naive, perhaps, to have trusted the medical profession the way we did, but it was not stupid. We were lied to, pure and simple."
"We do what we're supposed to do (breed, feed the young, hunt for roots and berries), and what do we have to show for it? Stretch marks, saggy boobs and hunched shoulders. Which wouldn't be all that bad if only Nature also programmed us to worship and adore stretch marks, saggy boobs and hunched shoulders."
--From the bulletin board
The seminar at the Scottsdale resort is about breast implants. Two organizations, Phoenix-based Women's Informational Network and Tucson's Women Empowered Inc., have invited a who's who of the implant world for the two-day event. The speakers include doctors, educators, authors, litigants and, naturally, attorneys.
A banquet hall at the Holiday Inn Sun Spree Resort is filled with some 600 people, mostly white women, who are there to soak in a numbing onslaught of information.
The women range in age from their early 20s to their late 60s. Some appear to be pictures of health. Others are wheelchairbound.
Some, including Teresa Butler, are with their spouses or boyfriends. Many are by themselves.
Arizona Attorney General Grant Woods is the only local politician savvy enough to attend the seminar. Woods gives a short rah-rah speech about how this breast-implant mess is going to be a top priority for him this year, and he gets a standing ovation when he's done speaking.
Dow Corning first marketed silicone breast implants in this country in the early 1960s. At the time, the implants seemed a wonderful improvement over liquid silicone, which Japanese cosmeticians had began using in the 1940s to enlarge women's breasts.
After World War II, according to congressional testimony in 1990, about 50,000 women had liquid-silicone injections, which sometimes caused terrible scars, systemic illnesses and death.
The implants encapsulated the silicone in bags intended to prevent the gel from seeping to other parts of the body. But the implants have turned out to be far from perfect. Dow Corning memos released to the public in 1992--the same year the U.S. Food and Drug Administration ordered a moratorium on the production of silicone implants--prove that the company knew its implants bled, allowing the silicone to migrate in the body. The company also had kept to itself vital information about connections between autoimmune disease and implants.
The link was not made public until 1983, when a scientist at Stanford University revealed the connection between implant leakage and systemic autoimmune disease. The link, which is still being hotly debated among scientists, indicates that the lymphatic system collects escaped silicone in a complicated process that may impair a woman's immune system. Autoimmune diseases can cause thyroid disorders, skin tightening, lupus, mixed connective tissue disease and other maladies.
As of last February 1, women had reported 64,012 silicone and saline breast-implant injuries to the Food and Drug Administration, including 15,000 cases of rupture or leakage--mostly rupture. An FDA spokesperson estimates those numbers probably represent fewer than half of the actual injuries caused by faulty implants.
However you slice it, that's a small percentage of the approximately 1.5 million women who have gotten breast implants since the product's mass introduction three decades ago. And polls commissioned by a plastic surgeons' association indicate most women are content with their new shapes.
But the FDA statistics are terrifying to those ill women whose doctors once assured them of the implants' safety. What galls a vast majority of those women is that they got the implants by choice, not necessity.
By all accounts, about 80 percent of the women who have breast implants got them for strictly cosmetic reasons. The other 20 percent got their implants for postmastectomy breast reconstruction and related reasons.
More than 12,000 women have filed breast-implant lawsuits in federal and state courts nationwide, including more than 250 women in Arizona. Local attorneys confirm hundreds of Arizona women are contemplating suits against implant manufacturers and, in some instances, against their plastic surgeons.
The controversy is in such flux that a 12-page New York-based journal, Medical-Legal Aspects of Breast Implants, is published monthly. Some recent headlines: "Silicone Sisters Attract Implant Experts to Florida," "Topless Dancer Loses to Dow" and "Peanut Oil As Substitute for Silicone Still Under Consideration."
As the first day of the Scottsdale seminar ends, prominent San Jose, California, plaintiffs' attorney Sal Liccardo puts his best spin on the status of breast-implant litigation.
"I'm telling you, 1994 is going to bring the destruction of the myth that there's even a question of whether silicone implants are bad or not," says Liccardo, known nationally for his work in high-profile class-action cases.
"What we've seen so far is just the surface. The worst cases haven't reached the courtroom yet. Now, you're going to hear about studies in the next year that say 'no causal link' between silicone and disease. But when a study is being funded by the industry itself, how do you expect it to turn out? It's junk science."
No one from the "industry" is present at the seminar to refute Liccardo or the other speakers. It may have been instructive, for example, if someone from the American Medical Association had appeared.
Earlier this year, the AMA proclaimed the breast-implant controversy overblown hysteria. A report published in the AMA's journal claims in part: "The anxiety over breast implants is not warranted based on current scientific evidence. . . . No clinical data are available that definitively prove that an increased incidence of breast cancer or any other type of cancer is associated with silicone-gel breast implants."
Few, if any, at the seminar give credence to the AMA's conclusions. That goes double for the women who are ill: In their hearts--and now in the minds of many of their doctors--they are convinced their breast implants are to blame.
Proving the pivotal link to juries is the job of plaintiffs' attorneys such as Sal Liccardo. He has to catch a plane soon after his presentation. But he doesn't get away so easily. A blond woman in her late 20s rushes up to Liccardo in the lobby.
"I came to this because I'm really having physical problems and I think it's because of these," she says skittishly, pointing to her breasts.
Liccardo nods politely, as the woman continues, rapid-fire.
"The doctors can't tell me anything and I'm sick and I just don't get any better and I don't know if I should get them out and if I should get a lawyer or what I should do. The only thing different in my life is the implants. I used to love them. Now I think I'm going crazy."
Liccardo waits until the woman comes up for air, then addresses her calmly and directly.
"Listen, there's lots of ways to go here," he says. "I hope you get to talk with as many people at this seminar as you can--other women, attorneys, doctors. There are lots of women in your shoes--that's what this is all about. You're not crazy."
Liccardo really has to go now, and he excuses himself.
The woman walks quickly to a nearby pay phone and punches in a number.
"I just talked to a big-time lawyer," she tells the party on the other end, "and he tells me there's lots of girls in the same boat as me. Yes, really!"
"I have watched my wife go from a very active person to one who is in constant pain from her joints, fatigue, hair loss and rashes, etc. . . . There is no way these companies should get away with what they did to women. They have lied, they have covered up the problems that they knew existed with implants as far back as 20 years ago."
--From the bulletin board
On March 23, attorneys who had been negotiating at an Alabama yacht club announced a proposed settlement of the so-called "global" breast-implant lawsuit.
Three companies--Dow Corning, Bristol-Myers Squibb and Baxter Healthcare Company--tentatively agreed to pay $3.7 billion over 30 years to women who claim injuries caused by silicone-gel breast implants. Attorneys for both sides agree the settlement is not as devastating to the implant manufacturers as it may appear at first blush. The firms will not have to admit wrongdoing, just pay money.
The highly complex settlement also would eliminate the defendants' mammoth legal fees, and opposing litigants agree the companies may actually parlay the settlement into tax breaks that will further reduce their liability.
Despite news stories to the contrary, the deal isn't set in stone. It must first pass muster with the firms' boards of directors, and then with a federal judge overseeing the matter from Alabama.
But if it holds together, as expected, the settlement will mark the largest such payout in the nation's history. Even if that happens, however, it's unlikely any of the women would receive a penny for years because of the settlement's proposed structure. And the hundreds of attorneys involved likely would receive 25 percent of the settlement, leaving less than $3 billion to be divided among the women. The ramifications have been the subject of spirited debate among the brigade of barristers and their clients. Some key questions:
Should a woman whose medical problems may be related to her implants become part of a settlement in which the maximum award to an individual would be $2 million--and in which the vast majority would receive far less than that? Or should she risk an individual lawsuit with no guarantee of collecting a cent?
Women of all stripes now have even more reason to take stock of their legal choices. Last month, women plaintiffs at two federal trials in Houston won stunning victories in silicone-gel breast-implant cases. In one of the cases, a jury awarded three women with immune and nervous-system illnesses $33.5 million in damages after a bitterly fought trial.
Their attorneys claimed faulty breast implants manufactured by the 3M Corporation and two other companies had caused the serious illnesses: immune-system lupus in one woman and a degenerative nerve disease called neuropathy in the other two.
In a second verdict, a jury imposed a $12.9 million judgment in favor of three other Texas women, also against 3M and two other onetime silicone-gel manufacturers. The panel determined that leaking implants had led to severe illnesses and that the firms had engaged in a "civil conspiracy" to avoid responsibility for their products' failures. The Houston area is noted for its large plaintiff verdicts. Still, the whopping wins have forced many women to reconsider the advantages of "opting out" of the proposed March 23 settlement, if and when the time comes.
But women who opt out will have to take their chances in one-on-one lawsuits.
"We need a sense of what each of us might get from the settlement," a BBer wrote as the attorneys wheeled and dealed at the Birmingham yacht club. "Let's not sell ourselves short. We will not be swept under the carpet like other class-action victims. These deals only make class-action attorneys rich."
Another woman warned: "As much as we support ourselves emotionally on this BB, we must keep abreast (pun intended) of what's going on in each of our states re: punitive damages, caps and other thief-in-the-night legislation."
Though the tone on the bulletin board is almost always congenial, there have been tense moments as the implications of the big settlement have started to hit home.
"When I read your letters, I wonder if you are a Dow plant or something," one BBer told another during a testy discussion about litigation strategies. "You obviously don't have any medical problems or you would be rip-roarin' mad like the rest of us. . . . GET SMART!"
"How dare you insinuate that I work for a sleaze like Dow?" the first writer responded. "We don't all march to the beat of the same drummer. . . . Litigious militancy will not serve my purposes. Like I tell my kids, if you don't have something good to say, don't say it."
"They told us: 'Implants are perfectly safe. Silicone is an inert substance and will do us NO HARM whatsoever. A thousand years from now, the anthropologists will dig up your body and will find nothing but bones and two perky implants.'"
--From the bulletin board
Teresa Butler shuts her eyes tightly as she recalls her decision in 1989 to get silicone breast implants.
"I lost so much weight after my first son was born, and I thought I didn't look my best," she says, sitting in a small room that serves as a computer room/kids' playroom in her expansive home near downtown Phoenix.
"My figure was fine for me, but I didn't think it was what it could be. Lots of my good friends had and have them. It was the thing to do, a piece of cake. So I just decided to do it."
Before she took the plunge, however, Butler says she grilled her plastic surgeon about the safety of the implants.
"I asked the right things," she says, "things like how long they last and can there be side effects and other problems. In the end, he drew little pictures on my file that showed what I looked like compared with what I'd look like after I got them. He did a good sales job and reinforced my insecurities at the same time."
The November 1989 surgery went off without a hitch, Butler says, and the results thrilled her.
"I was the contented consumer," she says, managing a doleful smile at the thought of it. "Then I started to get sick."
Generally, she suffers from deep, chronic fatigue, inflammation of her joints and other maladies common to what's now being called Silicone Adjuvant Disease, or SAD. Because Butler plans to file a lawsuit against the manufacturer of her implants, her attorney has asked her to refrain from discussing the specifics of her medical problems.
"The doctors I saw couldn't pinpoint what was ailing me," she continues. "Here's the AMA saying the breast-implant thing is a scare, and some of the doctors apparently had little more to go on than I did. No one told me that I should go see an immunologist or a rheumatologist. All I knew is that I felt different and worse than I'd ever felt in my life."
Finally, last October, a Phoenix rheumatologist concluded that silicone poisoning is the probable cause of Butler's ills. "I got mad at him at first," Butler recalls. "It's not that the implants had turned my breasts hard like they do in many women. They hadn't ruptured or anything. But I was sick, and I wanted to know what was wrong with me."
Butler and her husband, Reid, a Phoenix attorney, designed a crash course of self-education about breast implants. "We couldn't believe there was so much written about it," she says. "My eyes started to open wide, and I haven't shut them since."
Late last year, their wives' health arose in a conversation between Reid Butler and a friend. It turned out the other man's wife has suffered ills similar to Teresa's.
"We started to compare notes on the phone," Teresa Butler says, "and one day, she asked me if I had a home computer. I said, 'Sure.' 'You have Prodigy?' I didn't know what it was. But when she told me about the bulletin board, I just got really excited."
Butler became a "silicone sister" soon after her husband bought her the Prodigy program for Christmas last year.
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"All these women were saying the things that were in my mind," Teresa Butler says. "It's a wonderful tool, kind of like a little community."
She interrupts herself to sign on to the board. As if on cue, a BBer from the Pacific Northwest has typed something in:
"It is most comforting to know I am not alone. One of the things I have learned with all this is that we are all different--not only in our symptoms or lack of them, but also in how we regard the present situations we find ourselves in."
Chimes in a woman who had her implants surgically removed, "Granted, I am not able to pose for Playboy, but I really don't look so very awful. . . . A chest is only a chest. A LIFE IS A LIFE!"
Butler had her own implants removed last January 10. She nods in solemn agreement with her unseen pal. The comments of a third woman cause her to chuckle gently.
"I have a question for those of you with implants," the BBer writes. "Is there ever a time when you are no longer aware of them? I am always conscious of the fact that aliens are sitting on my chest."
"Aliens on my chest,'" Butler repeats. "What an image. Sounds like a song. But those aliens sure can cause us a lot of grief when they want to.