Until 8 years old, Ben lived a very typical childhood for a young boy who loves playing video games. An accidental trauma which caused some facial pain prompted a trip to the emergency department in which a CT scan was performed. While no facial injuries were detected, an incidental finding of multiple jaw lesions became the focus. His mother feared the worst, having been diagnosed herself with Gorlin Syndrome when she was a child.
Gorlin Syndrome is a hereditary condition associated with recurrent basal cell carcinomas and benign bone tumors that most commonly affect the upper and lower jaws. A high rate of recurrence often leads to multiple surgeries in the adolescent years and can have serious facial and dental consequences, requiring strict attention to protocols and a team of multiple specialists.
After months of struggling to find a team that was willing to accept and confidently treat his condition, Ben and his mother found Dr. Weiss at the Kansas City Cleft and Craniofacial Center. Ben underwent surgery to remove 5 large odontogenic keratocysts. A brave kid with tremendous support from his family, he is healing well and will continue to have serial surveillance CT scans performed to monitor for recurrence. At the Kansas City Cleft and Craniofacial Center, a comprehensive team of surgeons, physicians, dentists, and therapists will collaborate and ensure he has coordinated access to every aspect of his care.
“The surgery was explained very well and went as expected. Ben is healing very well and the doctor was great!” – Father and Step-Mother
I am very grateful for Dr. Weiss and his team! After visiting another group, whom I felt didn’t take this as seriously as needed, I am very thankful for moving his care to Kansas City Cleft and Craniofacial Center! The team continues to take great care of my son! Having Garlin Syndrome myself, I know not a lot of doctors are aware of the symptoms/treatment and ongoing care needed. The fact that Dr. Weiss already has a care team in place to conquer any obstacles this syndrome may cause and catch them early makes my life that much easier! – Mother
