I was lucky in the fact that my primary doctor realized something was wrong, did scans and determined it was a para, referred me to a vascular surgeon, who referred me on to Mayo, all within a few days. But the surgeon did order a 24 hour urine test, which the endo at Mayo had me redo. So my gut says to just have them do the referral and then let the Mayo doctor(s) have you do the tests they want. I also didn’t have any blood pressure spikes or anything so going on meds wasn’t really an issue. If you are having trouble with that then I would keep the endo appointment. If possible I am going to try to send you a private message with my phone number if you want to talk/text. I remember how overwhelming it was when I was first diagnosed and everything I read on the internet either confused me or terrified me. But I had a great outcome and am doing well! Para eviction December 2016 😃

Just go to Mayo and follow their indications. As many have said, they do their own test. I would suggest to get an appointment and follow what they say. They are experts and paragangliomas are kind of rare.

Hello? 👋 can’t believe I’m reading this about paraganglioma and carotid body tumor. This is what I believe I have. Mayo in az 2012 diagnosed and said no biopsy because they are vascular. Fast forward to now. Carotid body tumor appeared and fast, tipping over, hitting my head, heart beats fast sometimes. Swishing sounds in my ear , lots of pressure. I have been to Tampa to a team there. They said only radiation because it’s on my vagus jugular and carotid and too risky. Went to Moffit and they found something in my tonsils. They want to rule out anything else. I’m a cancer survivor too colon cancer 2012z so I have appts next week to see ent surgeon and for a biopsy. Not of tumor but of tonsils. They said surgery would leave me paralyzed but doing nothing will stop heart rate breathing and respiration and I’m already choking on food. Swallowing is an issue for sure. Do I go to mayo? They said radiation may halt but not stop growth. The cage thing is quite scary. I wonder what else is out there? I see an endocrinologist soon but feel an experienced one at Moffit or Mayo would be better. Mayo is far from me which is why I chose Moffit which was a step up from Tampa general. I’m wondering how long I can be in my career with hitting my head and splitting it, falling over out of nowhere. I work in derm with scalpels and don’t want to hurt patients or the Dr. but I don’t have another backup to pay the rent single mom two children. Amy feedback helpful. I don’t know what direction to go or what to do. I’m losing hope and freeze mode is happening more. It’s very lonely. Does anyone know anything about PRRT Lutathera or anything else as an alternative to radiation?any help would ease the mind right now, it’s hard to think about other things. I would be happy to share my scans CT’s mris dotatate, pets, urine tests showed nothing but my paraganglioma on carotid lit up bright. MET or not we shall find out. But what to do in the meantime. I’m out of pto at work and I live in Nokomis FL Mayo is a drive and I can’t keep missing work. Has anyone gone on short term disability or long term for treatment? I’m terrified. Much gratitude for reading this or any part of it. There are so few people like this it’s a wonderful th ing to have a forum to help one another. Gabby