I'm 70 yrs old, happened to mention to my GP that sometimes I would wake up in the night with a rapid, strong heartbeat, anxiousness, a little dizzy. (Has been going on for years, but by the next day it was forgotten about) This would go away in a few minutes, and I'd go back to sleep. GP, then Cardiologist, and when I said it seems like a mild adrenalin rush, to an endo doc. Took 6 months of urine tests, 2 MRI's to finally point to a "growth" next to the left side adrenal gland. Met with surgeon a few weeks ago, he described what it was, a paraganglioma, and discussed removal. I asked if that was necessary, sure is! Can't keep dumping adrenalin into your body. His specialty is endo surgery, asked him how many of these he has operated on, "to date? none"! Evidently they are very rare, like 1.7 per million people.
A few people have said that I should look for someone who has done this operation before, but I figure he needs to get his first one somewhere. The aim is laproscopic, but he said it might end up having to open up normally. Two worries about it, it is right next to a major blood vessel, and the tumors can get pissed when you mess with them and dump a lot of adrenalin, stopping your heart. Lovely. I have read in several places that they try to stop the hormone production before surgery with drugs, and he's using an alpha blocker. From what I can gather, they judge how well that is working by monitoring my blood pressure, which isn't going down as much as desired. With 3 weeks to go, I'm wondering if they will try something else.