Hemangioblastoma nightmare

Earlier this year my husband was diagnosed with a benign brain tumor located on the brain stem about the size of a half dollar, which was removed. The neurologist told us all the risk, but said they were "rare" HA HA. Everything that could of happened, happened to my husband. He had almost no symptoms before the diagnosis and now has all the issues he should of had before. i.e. ataxia, double vision, swallowing issues, gastrointestinal problems. He currently has a tracheostomy in place, on oxygen all the time, very ataxic, numbness, tingling in all extremities, low blood pressure, central sleep apnea, and the list goes on. He was told he had VHL, which wasn't diagnosed from blood work, it was diagnosed from the location of the tumor and biopsy. We spent 4 months at the University of Colorado and have been home almost 4 months now. Everyday is scary for us, especially me. My main concern at this time is the sleep apnea. He's on a Bipap machine and still cont not to breath at times. Anyone who has experienced these symptoms or anything similar please write. Thank you