daughter with NF newly diagnosed spinal cord syrinx

Hello all, my daughter is 9 years old and has just had a total spine MRI due to scoliosis. This MRI showed a syrinx from T3 to T8. The last MRI she had was in 2006 and the spinal cord was normal. She does have Neurofibromatosis, but no tumors have shown. She has a plexiform tumor on the lower part of her back but it does not invade in her spine. We do have an appt. with a neurosurgeon on April 11th but I wanted to see if anyone here has any advice. She has also had numerous brain MRI's and nothing shows abnormal except the "bright" spots typically found with NF. Thanks in advance