Great Neck, NY – A 13-year-old Florida boy’s life has dramatically changed following surgery by Harold L. Rekate, MD, neurosurgeon at Cohen Children’s Medical Center, to treat a rare, connective-tissue disorder called Ehlers-Danlos Syndrome (EDS).
Dr. Rekate is one of the first neurosurgeons to describe the relationship of distortion of the front of the brain in EDS patients and how to treat it.
Bobby Leithauser of Marco Island, Fla., was suffering from the disorder. He was suffering from a chiari malformation, which is characterized by brain tissue that extends in the spinal canal. This weakened 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.
Dr. Rekate reviewed Bobby’s magnetic resonance imaging (MRI) scans and knew surgery to reposition the boy’s skull would lessen the pressure on his brain and restore a proper flow of cerebrospinal fluid.
“The problems that Bobby faced related to pressure in the front of the brain caused by the fact that the ligament holding the skull and spine in proper alignment was too loose,” said Dr. Rekate. “This led to the top of the spine pointing backwards into the brain. In the operating room, we manually rotated his head backward and put the skull and spine in proper orientation. By doing this, we were able to successfully take all of the pressure off the brain. This has made a huge difference in Bobby’s life!”
Growing up, Bobby was a healthy and athletic boy playing basketball and baseball. At the age of 9, however, Bobby started to experience extreme gastrointestinal (GI) issues and was no longer able to participate in the sports he loved. The severe GI issues led to Bobby requiring a feeding tube, however, shortly afterwards Bobby wasn’t able to tolerate the amino acid formula.
At age 12, Bobby was given another diagnosis called dysautonomia, an autonomic nervous system malfunction, which controls automatic functions of the body such as blood pressure, heart rate, digestion, temperature control and dilation and constriction of the eye’s pupils.
Over the next year, Bobby’s condition continued to deteriorate and he was barely able to walk, requiring a wheelchair. Bobby symptoms, including nausea, severe stomach, muscle, neck and joint pain, severe headaches, visual disturbances, acid reflux and attention deficits kept the former gifted students pupil him from attending school.
With all of these symptoms, Bobby’s mother, Keri, knew that there must be something more to his diagnosis than dysautonomia. Repeatedly, she was told by doctors that the MRI images were normal. She went online and found out that dysautonomia was sometimes linked to EDS and chiari malformation.
Mrs. Leithauser’s research led her to North Shore-LIJ’s Chiari Institute in Great Neck, NY, a worldwide leader in the treatment of Chiari malformation and other related disorders. Dr. Rekate is director of the Chiari Institute. The Institute was the first center to find the link between Chiari I malformation and EDS and the first to discover and investigate the relationship between EDS and functional cranial setting.
“People across the country are told that their MRI images are normal and continue to suffer because the EDS component is not well understood by most neurologists,” said Mrs. Leithauser. “I want families to understand how vitally important it is to find a neurosurgeon with expertise in this particular area. Most neurosurgeons do not understand Chiari and cranial setting when it develops from EDS, but Dr. Rekate is one of the few physicians in the country who understands that link and knows how to treat it.”
Upon reviewing Bobby’s MRI’s, Dr. Rekate was confident that Bobby would be a good candidate for surgery to relieve the symptoms associated with EDS and Chiari.
“Dr. Rekate is an amazing neurosurgeon who saved my son’s life,” said Mrs. Leithauser. “A few days after surgery, all of Bobby’s symptoms were gone. No more stomach pain, nausea or dizziness. His vision returned and his brain fog is completely gone. Bobby can read again! He will be in physical therapy to regain strength and range of motion. Thanks to Dr. Rekate and his team, my son is looking forward to going back to school and being a kid again!”