Recently been diagnosed with Paraganglioma

Hi @cynthia2121, I'm tagging a few members who have experience with a paraganglioma like @cudabrown @shanda @saylor479 @coachv @puddknocker @sharik and others.

Cynthia, how are you doing? What treatment plan has been suggested for you?

Hi Cynthia! My para was in my neck so I’m not sure if I can be helpful, but…

One of my first suggestions would be to join the Facebook (if you use that platform) group “Pheochromocytoma and Paraganglioma Support Group”. There is so much good information there. Many people struggle just to get a diagnosis as these kind of tumors are not always so easily found. I was fortunate to have a wonderful primary doctor and got my referral to Mayo right away. I truly received the best care there and can’t say enough good things about them!

If a para is suspected, it should NOT be biopsied. They are endocrinal and the biopsy can make them “angry”.

If you want to speak one on one please reach out to me through this portal. I wish you well!

Cynthia,
I was also recently diagnosed w a paraganglioma. Mine is in the V of my carotid artery in my neck. Lots of frustration w local drs... they were talking biopsies, doing a scan every 6 mos (sounded indefinitely to me). They obviously had no experience . I found sooo much info w online research at Dana Farber, Stanford, Johns Hopkins, Boston Mass, and Mayo, in a very short amt of time. I have ALOT of faith in Mayo Rochester. Our son had multiple maxillofacial surgeries there, and our daughter finished grad school there and is a VERY knowledgeable P.T. Definitely believe in their Gold Standard! I have an appt in Aug for 2 days of tests, scans, consults and genetics, as my father died after surgery on a tumor on his carotid artery, and he did not go to Mayo. They'll even help you w travel, lodging, etc. Note: don't buy your plane ticket til you call them; they can help w discounts and if u have to change travel if u have to stay longer, they can help even if u have a nonrefundable... but not after the fact.
I'm still pretty scared, but have gained a little more confidence now. I feel like I'll be in the best place I can be, so it will go as well as it can. Sending hugs and very best wishes.
/s/ Wendy

Cynthia,
I was diagnosed with Carotid Body Paraganglioma 13 months ago.
Two miss-diagnoses before. I had seven enlarged lymph nodes in the neck. Two growths in the right kidney. No biopsies for either Paraganglioma (PG) and Pheochromocytoma (PH). Testing if they are active is not very accurate. Biopsies will most likely make them spike. My PG was active, norepinephrine and dopamine. PH can do adrenalin as well. Trigger testing is not approved here. Most hospitals in US do 24hr urine or blood test at rest.
I did a test in Sweden, an active trigger, my blood pressure went up in 180s.
Highest I have had was 247 over 185. Episode only lasted about 45 minutes.
For example, early diabetes test will make Pheochromocytoma spike to raise your blood pressure. You will see information does not exist in a single place. I had to write a couple of AI models to find anything and everything for PH and PG.
Testing for PG PH genetic mutations is critical. I learned that i have SDHB mutation.
My primary is at MD Anderson cancer center in Houston. I got my second opinion at Mayo, and third at the Cleveland Clinic. Cleveland clinic actually has a Paraganglioma and Pheochromocytoma Institute. They work closely with NIH. Great information source.
Like I said, my diagnosis day was last year in May. Surgery in November to remove the PG that was wrapped around Carotid (between shambling 3 and 4, meaning almost completely wrapped around the artery) and Vagus nerve.
Post surgical complications are First Bite Syndrome, parotid gland failure, some speech problems, and the surgery bed area does feel like you are wearing a nice soft wool scarf over that part.
Anything I can do to share my experiences. Please just ask.
We are all stronger together.
You are blessed!

Sincerely,
Coach V