Hi Lisa
Well, now you need to use the search on this site to find the answers to as many questions as possible and then write down what you want answering at the hospital, as the other have stated you need a major head and neck center, even if you have to travel. We are here for questions, to vent to, or to support you in what ever way you need, please don't consider anything to small or to trivial we are all travelling the same road..
Sunshine... love and hugs
Helen