Breast Implant Illness: Symptoms, Patient Concerns, and the Power of Social Media

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Despite having been temporarily removed from the U.S. market in the late 1990s, breast implants are approved for use in augmentation and reconstruction. Although it is accepted that there is an association between implants and anaplastic large cell lymphoma, breast implants have not been shown to cause autoimmune disorders or other systemic illnesses.1,2 However, there is a cohort of women who pursue explantation because of what is referred to as “breast implant illness,”3 a term used to describe a constellation of symptoms and signs thought to be caused by implants.3 There is no known pathophysiologic explanation or diagnostic testing for breast implant illness. In addition, many of these patients have very specific requests for the explantation surgery, such as performing total capsulectomy, culture of the saline inside the implants, and intraoperative photographs.
To evaluate perceptions of breast implant illness, we reviewed online activity on two breast implant illness support groups (4200 and 18,800 members, respectively) on the popular social media site Facebook. We began by focusing on content relating to breast implant illness and augmentation. Of the 345 posts and comments reviewed, 165 (48 percent) describe a symptom of breast implant illness, such as fatigue, chronic pain, rash, body odor, irregular heart rate, anxiety, neurologic abnormalities, hair loss, and endocrine dysfunction. Forty-five percent reference surgical management by asking questions, recommending surgery, or describing their experience with explantation. No post or comment expresses regret after explantation. Amidst many posts describing frustration and distrust, several members relay positive experiences and express gratitude for support from fellow “Breasties” and surgeons who listened to their concerns (Table 1).
To assess breast implant illness specifically in the setting of reconstruction, we used the search terms “mastectomy” and “reconstruction” and reviewed 73 posts. Eighty-one percent of posts mention dissatisfaction, to which there are several attributing factors: 66 percent reference unexpected illness after implant placement and 58 percent report a general feeling of unwell. Forty-four percent of posts mention pursuing implant removal, 50 percent of which describe improvement after explantation.
For both augmentation and reconstruction, Facebook group members often express frustration with plastic surgeons when there is a perceived dismissal of symptoms (Table 2). Some symptoms may be attributable to indolent infection after implant placement, and surgeons should maintain a high index of suspicion for infections caused by atypical organisms.4 Individuals’ comorbidities should be evaluated to rule out unrelated causes. The thousands of individuals who share experience, seek support, and express frustration on social media, and the contrast in attitudes toward plastic surgeons expressed in posts found in Tables 1 and 2, suggest a gap in communication between many patients and their surgeons. We recommend validation of individual concerns and educating patients that we currently do not know of a mechanism by which implants can cause any of these systemic symptoms.2–5 However, surgeons should consider respecting the patient’s wishes, removing the implants, and informing the patient that roughly half of women with symptoms of breast implant illness may improve after explantation.
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