Paraganglioma / Carotid Body Tumor Question

Yes, it is very weird to only have half of my face covered in sweat! But it was the best of all possible outcomes.

Anyone who has a Retrostyloid vagal nerve paraganglioma? I was diagnosed at Mayo. Would love to hear about your experiences and how you are handling the symptoms. I was not a candidate for surgery due to the location and carotid artery involvement.

I was diagnosed at Mayo. They would not biopsy. They are the best. I have practiced in healthcare for 35 years and my husband is a physician. We would not consider going elsewhere. They go the extra mile to accommodate you.

I had mibg scan show mild asymmetrical uptake right of neck and faint uptake salivary gland area July 2021. Had 24 hr urine normets come bck 4 xs normal level. Plasma normets only slightly elevated but retested 4 xs and all showed slight elevation. Ulltrasound April 2022 showed multiple well circumscribed hypoechoic 3.1 cm and 3.9 cm bilateral nodes. Follow up mri w/gadolinium 45 days later showed well circumscribed bilateral 3.1 cm and 3.9 cm craniocadial length in jugulastiric region, level 11A. Also noted well circumscribed homogeneous, low T1 and high T2 signal bilateral nodes posterior 6 mm and anterior 8 mm left partiod gland. Ordering a CT with angion, what will this show that others didn't show? Doctor afraid if orders PET 68 gallium it won't light up if not a somastin tumor. Feels the CT with angion will show if is in fact carotid body tumors or paragangliomas. IM VERY SYMPTOMATIC, PROFUSE SWEATING IF I GET UP START MOVING AROUND, ELEVATED PULSE RATE, HIGH BLOOD PRESSURE, WEIGHT GAIN AND INABILITY TO STAY ASLEEP THROUGHOUT NIGHT.

What will a CT angion show that a mri with gadolinium didn't show?

I'm a new patient, with lots of questions.
I'm 74 years old, and was told last week that I have a malignant paraganglioma, aka carotid body tumor. I found it about two months ago while I was shaving, and it has grown rapidly. I have been to three doctors at three different hospitals, but finally have an appointment to see a hematologist/oncologist. I'm not worried, but I do have a lot of questions and concerns. I hope the treatments won't be too bad, or continue for very long.

Welcome, @puddknocker. I can imagine you have lots of questions. I moved your message to this existing discussion:
– Paraganglioma / Carotid Body Tumor Question https://connect.mayoclinic.org/discussion/paraganglioma-carotid-body-tumor-question/

I did this so you can meet other members like @northwoodsbarb @labgirl57 @hdanielle62000 @sharik @patriciagsr @tenclawz @cootiesgirl1 and more who have experience with paraganglioma.

Paraganglioma is a type of neuroendocrine tumor that forms near certain blood vessels and nerves outside of the adrenal glands. You may be interested in following the discussions in the Neuroendocrine Tumors (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

As you prepare for your meeting with the oncologist, I suggest keeping pen and paper (or notes on your phone) handy to jot down questions as they come to you. Here's a few that I would ask:
- What are my treatment options?
- What tests will I have to determine more about the paraganglioma and my treatment options?
- What are the expected benefits, risks and side effects of treatment?

What questions would you add?

Hello puddknoker, I am sorry for the news you received last week, I totally feel for you.
I had mine removed in Mayo Clinic Jacksonville in Dec 2018, had a very difficult 18 month recovery but after 3.5 years I am 85% recovered and leading a normal life.
How can I help you ? let us know your concerns and questions and we will try to give you our best input to help you.
Bye for now

I am so sorry you are dealing with this! Most paragangliomas are not malignant so it would be wise to also meet with a doctor that is not an oncologist but who has dealt with more paras. These tumors behave differently than others and most doctors with experience with them do NOT do biopsies prior to removal as they get angry. They are rare. Mine was thought to be a carotid body tumor, but during surgery it was discovered it was vagal. I had a cardiac surgeon as well as an ENT for my surgery December 2016 at Mayo in Rochester. They were a great team! I’m pretty much fully recovered. I can try to answer any questions you might have. I wish you the best of luck!

I appreciate your comments. My tumor is malignant, but I'm not worried. I have heart failure and should have died 20 years ago. But here I am, just past normal life expectancy for an American male. It ain't over yet.