Parry-Romberg Syndrome

Pediatric Plastic and Reconstructive Surgery

Parry-Romberg Syndrome

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Video icon Christine Honeycutt

Video icon Lucy Hancocks

Parry-Romberg Syndrome is a rare condition in which the soft tissue structures on one side of the face atrophy and deteriorate.

Little is known about this disease, but it is more common in young girls than boys and often only affects the left side of the face.

UW Health plastic surgeon John Siebert has operated on more than 140 patients with Parry-Romberg. When discussing the surgery with patients and their families, Siebert uses the example of Build-A-Bear™.

"I tell the kids that, just like building a teddy bear, we're going to take some of the stuffing from one part and use that stuffing to fill the part that's missing some," he says.

During the procedure, Siebert generally takes tissue from under the patient's arm and, using microsurgery, transplants the tissue and surrounding blood vessels near the ear.

"Initially, and to relocate the tissue, there is an eye and ear incision," Siebert says. "I lift the skin on the face and release the contractures, then fill the space. It's a mix of cosmetic and reconstructive surgery."

Patients then return after six months for revision surgery that can take one to two hours. During that visit, Siebert will fine-tune or "sculpt" the left side of the the patient's face to match the right side.

Early intervention is vital to the success of this procedure.

"Many people let the disease run its course before treatment, but I tend not to operate with this approach," Siebert says. "We don't know how severe (the patient) will progress. If it progresses quickly, it can severely affect patient development and growth.

"From our experience, we know the disease process will not affect the new tissue. The new tissue seems to slow or terminate the disease process so intervening early is best. It is especially beneficial in the pediatric patient because the disease process adversely affects facial skeletal growth. The transfer of well-vascularized tissue to the area seems to counteract that."