Women in state say ills tied to breast implants

Health woes unrecognized, they assert

Carla Perkins had her breast implants removed after experiencing mysterious health issues. “The doctor basically didn’t believe what I was saying. ... They want you to think you’re going crazy,” she said of breast implant illness, which isn’t recognized as a distinct condition.
Carla Perkins had her breast implants removed after experiencing mysterious health issues. “The doctor basically didn’t believe what I was saying. ... They want you to think you’re going crazy,” she said of breast implant illness, which isn’t recognized as a distinct condition.

Carla Perkins was tired, her joints hurt, and she couldn't think clearly.

The Benton resident, 49, first started having health problems in 2016. At one point, she was essentially bedridden, struggling with chills, light sensitivity, sinus infections and mental cloudiness -- "you're there, but you're not there," she said.

"I was in and out of the hospital; I was going to different emergency rooms. ... Every doctor I went to, they couldn't find anything. No one could find anything."

About 10 years earlier, Perkins had gotten breast implants, hoping to fill out skin after losing a lot of weight. But until she stumbled upon groups of people online who said they had similar symptoms, she didn't connect her implants to her illness.

Doctors, manufacturers and people with complaints similar to those of Perkins appeared at hearings before the federal Food and Drug Administration in March to discuss reports of mysterious afflictions many patients are convinced are tied to their breast implants. Those who say they are affected report a variety of health issues, including headaches, chest pain, anxiety and memory changes.

But there is a problem: Breast implant illness isn't recognized as a distinct condition. There is no test for it, little clinical data, and no official treatment. Some people also have been discouraged by conversations with their doctors.

"The doctor basically didn't believe what I was saying. ... They want you to think you're going crazy," Perkins said.

Catherine Honaker of Lead Hill got implants in the early 1990s to boost her self-confidence and help clothes fit better. Over time, her joints began feeling stiff and she had other health issues; once she told her husband that she was sure she was dying.

Then she read an account from model and reality TV personality Crystal Hefner describing breast implant illness.

"Like everybody else, before I learned about this, I just chalked it up to, 'Oh, my god, I have bad genes, I'm aging before my time,' or 'This is what it's like to start getting old,'" she said. "But that wasn't the case."

In May, FDA officials issued new guidance that stopped short of officially recognizing breast implant illness. A statement said the agency lacks definitive evidence of a connection, but it acknowledged that some people found that their systemic health issues resolved after their implants were removed. Perkins and Honaker are among them.

The agency also declined to pause the sale of textured implants -- linked to a rare cancer by the World Health Organization and now banned in France and Canada -- saying further investigation into the association is needed.

Some patients say the response from regulators and medical professionals has been too cautious.

"Most of the doctors, right now, just say it's all a bunch of hogwash and it's all in our heads," Honaker said. "I don't think they're ever going to say no, don't [get implants]."

DOCTORS WEIGH IN

Cosmetic breast implants have become much more common in recent years, with about 300,000 people receiving breast augmentation surgery in 2017, according to the American Society of Plastic Surgeons.

That's a 41% increase since 2000, but it's unclear how many of those people experienced problems beyond FDA-documented complications such as breast pain and sensation changes.

Asked for their thoughts on what breast implant illness could be, two Arkansas plastic surgeons called for more research while stressing that they would never diminish the experience of a patient.

"There must be something to [breast implant illness]," said Dr. Eric Wright, a plastic surgeon in private practice in west Little Rock. "Unfortunately, the science hasn't caught up with what, exactly, it is."

He noted that some Facebook groups associated with the condition count thousands of members.

For doctors, an issue that's ripe for further study is the fact that many people with implants have no complaints, and several of the symptoms patients tie to breast implant illness can stem from multiple causes.

However, Wright said he's removed a few hundred sets of implants over the past year, and he's been surprised by the fact that he hasn't yet spoken to anyone who regrets having them removed. (He checks in with patients a few times after their surgeries and hopes to publish a scientific paper about his findings.)

Dr. Michael Spann of Little Rock Plastic Surgery said there's been a lot of research on breast implants, but there hasn't been a study that definitively links implants to the "spectrum" of associated symptoms some women report.

"We don't really have an identifier that this is the problem, this is what's causing it," he said. "So as a result, I think that we're all a little bit operating in the dark."

Treatment for patients who feel they may have breast implant illness, Spann said, includes working with colleagues in other specialties to determine if there's another source of the problem. He said that if a patient still feels it's related to her implants, he always offers to remove them.

But there are some consequences to removal, not the least of which is its expense. Because there isn't an official diagnosis of breast implant illness, insurers often consider the removal to be a cosmetic surgery and won't cover its hefty price tag -- between $4,000 and $6,000 in Arkansas, Wright said.

Spann adds that there are other concerns in removing implants, including poor aesthetic outcomes and the fact that removal may not resolve health issues.

"I always caution my patients that we [can] do this, but it certainly gives no guarantee that your symptoms are going to be relieved," he said.

"Does [breast implant illness] exist? I believe to these patients that feel like they have it, it absolutely is an entity."

CANCER CONNECTION

An uncommon type of cancer -- breast implant-associated anaplastic large cell lymphoma -- has been more definitively tied to the implants, particularly the textured implants that are now prohibited in some countries.

Wright said the cancer is found in the capsule, which is scarlike tissue that forms around foreign objects in the body (such as breast implants). Although it's not common, with about 186 cases reported to a U.S. registry between 2012 and 2018, the possibility scared 36-year-old Sarah Beckcom.

Beckcom, who lives in Bentonville, got implants after losing volume while breastfeeding and was alarmed when she noticed "a squishy feeling" on her left side where fluid had collected around an implant.

Worried that it could be a sign of anaplastic large cell lymphoma, she went to several different doctors, asking unsuccessfully to have the fluid aspirated and tested for the cancer. Meanwhile, the implants kept getting harder and tighter on her chest.

Beckcom finally chose to have her implants removed in February. After the procedure, she said, she had to push for a pathologist to run tests for the disease, which ultimately came back negative.

"There's always that speculation in the back of my head -- could I still have it?" she said. "I shouldn't be the one that's showing them the guidelines for how to test me for my symptoms."

Beckcom said removing her implants resolved several health problems, including a rash on her left side that resembled eczema, weight gain and memory problems that had appeared within the past two years.

"You don't really put two and two together, and when you do put it together, it's like, 'Holy crap,'" she said.

She's written letters to the FDA about her experience, including one that was presented at the March hearings. One of her goals is to get the agency to ban textured implants, as well as encourage more doctors to routinely test for anaplastic large cell lymphoma.

For Beckcom, watching this spring's hearings was "emotional but also very validating."

"They were validating that the things that are going on are not supposed to be happening," she said.

"We're not all crazy, and we're not all making this up, and that there's something going on that needs to be looked into a little bit better."

A Section on 06/17/2019

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