My daughter has had aeseptic meningitis since her decomp surgery in Aug. '09. She has a bulge at the back of her head, which is a CSF leak. Her NS thinks she is having an allergic reaction to either the sutures or the bovine pericardium dura patch, so he has put her on steroids for the 2nd time. She has fevers, extreme pain in her neck, back, hips, and knees. She has terrible vision in her left eye, 20/40 is the best correction they can get so she wears one contact. She has had two EKG's and echocardiograms because of a high pulse rate (140) and they suspected enlargement of one side of her heart, but the pediatric cardiologist cleared her. Noone knows why her pulse rate has been so high. All these symptoms and she feels so terrible that she can't go to school. She will fail the 4th grade if we don't get some answers soon. I've heard that some people with Chiari I malformations also have EDS, but this is new to me. Anyone out there that can help? We live in SD, so I don't even know where to start finding a doc who knows something about this.