Hi! I have gotten behind in keeping up with email so sorry to be responding only now. My bilateral ANs appeared only much later in life but I went through a period of great fear of losing my hearing, like you. Thank heavens for HLAA with its information and support where I have been an active member in the NYC Chapter. It has been incredibly helpful for me and many others. I enthusiastically endorse any recommendations here for connecting with HLAA and note there are chapters in PA and Mass which you may want to connect with. I would urge you to google Katherine Bouton of HLAA and just scroll down to enjoy taking in all the helpful information about her and hearing loss. I think her email is posted there so you could email her as well. She has written 3 books on hearing loss which tend to be very readable and often with humor. I hope you can clarify what is meant when you you can't have a MRI because there is a "map" in your head.???