JACKSONVILLE, Fla. – It’s an illness not medically recognized, but a growing number of women say is affecting them: breast implant illness.
Jacksonville wife and mother Julie McCarthy is among them. She said she told her doctor that her breast implants were making her sick after experiencing strange symptoms including fatigue, hair loss, brain fog, joint inflammation and soreness, and short-term memory loss.
“I couldn’t walk a normal block around our block because I would be so out of breath,” she explained of her daily battle to perform simple tasks at her Southside home. “I would honestly be weak, and that meant I couldn’t really walk my kids in strollers even. Even if I was just pushing them, it was just tiring.”
Now, McCarthy has a message for those thinking about having breast implant surgery for cosmetic reasons or even for reconstruction after a battle with cancer. McCarthy, who said she had the surgery for both reasons, wants to warn others about what happened to her and how she says the illness took over her life.
When News4Jax first sat down with her, she was so excited she was having explant surgery.
“I actually think this is the first surgery in my life that I’m very excited,” McCarthy said just minutes before going under the knife to have her breast implants removed in late July. “I can’t wait.”
Five years ago, McCarthy was pregnant when she said she was diagnosed with a hereditary-type breast cancer. It was a tough fight, which included a mastectomy, but she beat it and gave birth to a healthy baby girl.
In February, McCarthy decided to undergo breast reconstruction surgery.
“I’m young. I’m 38 years old. I want to have a normal body if I can. And it’s out there. And, of course, my insurance covers it, so why not?” McCarthy said.
She said that’s when her symptoms started and hit hard. The most debilitating, McCarthy said, were the extreme exhaustion and joint soreness, which she said her doctor dismissed.
“You’re tired. I was told I had to exercise, I have Lyme disease, I have fibromyalgia,” McCarthy said. “I just knew there was something wrong. I just didn’t know what, and I was just believing the doctors, like, ‘OK, well then it just must be that.’”
Dr. Scott Ackerman, not familiar with the specifics of McCarthy’s case, said breast implant illness, or BII, is not only real, but he also said women are finding relief after having implants removed.
“A lot of the symptoms are pooh-poohed by medical practitioners, and women think that they’re crazy. They’re not crazy,” said Ackerman, the medical director of Ackerman Cancer Center. “I see many women report to me that they have less symptoms after that surgery than they had before. Again, what I’m saying is purely anecdotal. We really need science to back that up.”
Governing health authorities, such as the U.S. Food and Drug Administration, are still “investigating these symptoms to better understand their origins” and don’t recognize BII as an illness, in part, because many of the systems also describe a dozen different kinds of auto-immune diseases -- in which the body’s immune system attacks healthy cells -- such as rheumatoid arthritis, multiple sclerosis and Type 1 diabetes.
“Some women get the symptoms immediately after an implant, some get the symptoms many years later from an implant," Ackerman said. "And the symptoms that women get kind of wax and wane, so it’s really hard for us to get a handle, really get our arms around what this illness really is.”
Even though there has not been enough to officially declare BII an illness, he’s heard from enough female patients to identify it.
“I talk to a lot of women with breast implants related to the breast cancer, and many of them tell me that they have these symptoms,” he said. “I truly believe that breast implant illness is a real thing.”
Life after explant surgery
McCarthy ultimately made the decision to have her implants removed in an explant surgery after getting a second opinion about BII and, during her search for answers, finding a Facebook page called “Breast Implant Illness and Healing By Nicole,” which is a private support group of 100,000 mostly women with story after story of debilitating symptoms -- symptoms that so many said all but disappeared after having explant surgeries.
“Research, research, research because it’s just so incredibly real and scary,” McCarthy said.
When she was wheeled into the operating room for explant surgery this summer, McCarthy said, she was convinced her symptoms and suffering would subside so she could enjoy moments with her loved ones.
“I feel like it’s really robbed me. I feel like I’ve lost a lot with my kids, with my husband. I mean, I’ve missed out on family trips," she said. "I’ve missed out on a lot because of my just fatigue for so long.”
Inflammation and joint pain in McCarthy’s fingers and hands was gone almost instantly, she said, right after surgery.
“Right before I even went into surgery, you know, it was like my knuckles were just hurting so bad because they were so swollen,” McCarthy said. “I woke up and I was so excited because I could bend my fingers without them hurting.”
About eight weeks after McCarthy underwent explant surgery, News4Jax spoke to McCarthy again. There was a noticeable difference in her appearance. Her face wasn’t as swollen. She has lost 10 pounds and she said she didn’t do anything special to lose it. But McCarthy and her husband, Jim, said her transformation goes much deeper.
The couple said there’s no question in their minds that McCarthy did the right thing by having her breast implants taken out to relieve the joint pain all over her body.
“She had, she struggled mightily more often than not with the joint stuff. And we did all kinds of stuff to try to fix it -- from medicines to other things, holistic stuff. And within 48 hours, 72 hours, I mean she had improvement,” McCarthy’s husband said, snapping his fingers. “I mean probably, even the first 24 hours with her hands.”
He has had a front-row seat to what he describes as his wife’s now improving health after explant surgery.
“Even her skin, her smile, her energy,” McCarthy’s husband said. “She’s not out of breath at all. I mean, a month ago she would be tired, out of breath. Just this, she’s here, happy, great smile, ready to go.”
Both also agree that McCarthy’s physical change since explant surgery hasn’t been an issue.
“I know I might have some challenges with, you know, some clothes I was able to wear, I might not feel comfortable wearing anymore. I don’t care because I’m going to be healthy,” McCarthy said, laughing. “And I feel like I can live forever now.”
McCarthy said she is so scared, especially for younger women, that she wants to warn them, as well as breast cancer survivors, about what she says are the dangers of breast implants that no one warned her about.