@elgie17 I haven't yet met with any surgeons as I was just diagnosed three days ago. I am hoping to meet with two different surgeons next week, but hard to know how quickly I can get in. Usually it's 3 months to get an appointment. My doctor has marked urgent and I do think mentioning that it is paraganglioma might help to get in quicker. Where are you having treatment, is your surgeon a specialist in paraganglioma and if so, how did you find them?
Appreciate any advice and information you have on finding them right surgeron.