A 13-year-old boy Florida boy’s life was dramatically changed for the better thanks to tireless research by his mom and the expertise of a neurosurgeon at Cohen Children’s Medical Center.
Growing up, Bobby Leithauser of Marco Island, FL, was healthy and athletic. He played basketball and baseball, but at age 9, he started to experience extreme gastrointestinal issues and was no longer able to participate in the sports he loved.
He suffered for years from extreme gastrointestinal issues and was later diagnosed with dysautonomia, an autonomic nervous system malfunction that impacts automatic body functions such as blood pressure, heart rate, digestion, temperature control and dilation and constriction of the pupils.
His condition continued to worsen, leaving him unable to walk — on top of suffering from nausea; severe stomach, muscle, neck and joint pain; severe headaches; visual disturbances; acid reflux; and attention deficits.
His mother, Keri Leithauser, knew that there had to be something more to what was going on with her son, despite several doctors saying there was nothing abnormal in his magnetic resonance imaging scans.
After endless hours of research and communicating with online support groups about Bobby’s symptoms, Ms. Leithauser had a breakthrough. She came across information that revealed that dysautonomia is sometimes linked to a rare, connective tissue disorder called Ehlers-Danlos syndrome (EDS) and Chiari malformation.
This is characterized by brain tissue extending into the spinal canal, weakening the ligaments holding the skull. The condition occurs when part of the skull is pressing on the brain and forcing it downward. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity within the spinal cord.
Ms. Leithauser put the puzzling pieces of her son’s ailments together and was sure he had EDS and Chiari.
Fortunately, Ms. Leithauser’s journey led her to Harold Rekate, MD, a neurosurgeon at Cohen Children’s.
“Dr. Rekate is a unique neurosurgeon because he is able to identify problems that are a result of a connective tissue disorder,” said Ms. Leithauser. “There are very few neurosurgeons who have expertise in this area. We are so thankful to him!”
In December 2014, Dr. Rekate performed surgery to reposition Bobby’s skull to lessen the pressure on his brain and restore proper flow of cerebrospinal fluid.
A few days after surgery, all of Bobby’s symptoms were gone. He didn’t have any stomach pain, nausea or dizziness. His vision returned and his brain fog was completely gone. He continues with physical therapy to regain strength and is looking forward to going back to school.
Bobby Leithauser has recovered well after brain surgery.