Was it difficult to determine if your paraganglioma was active?

Hi. Did they test you for catecholamines as well? I also have a neck para in my right carotid artery. Mine secretes dopamine, 50 times normal. And for 2 years we thought it was not secreting anything as they only sent me for metanephrines and only for 24 hours urine, rather than blood plasms.

@elgie17 Hi, Thanks so much for all your responses. We are part of a very exclusive club sadly and it's so great to be able to chat with someone who has the same thing (although mine is on my left carotid artery). I honestly don't think the first test was done correctly. When I researched it there were very specific instructions that I know were not followed (the first instruction being to use a chilled tube and I saw her pull all the tubes from a cart right in front of her, nothing was chilled!) I mentioned this to the endocrinologist today and he has ordered 'new' tests which I suspect might be the one I should have had initially and the reason why I got the negative result. But that request was made by my GP before we had the Para diagnosis so it's not really anyone's fault. You just have to be SO on top of everything, it's exhausting and frustrating at times 🙁
In addition to the new plasma draw, I am going to do another 24 hour urine test. So this makes me happy that we are doing everything to try to figure out if it is secreting or not. It is apparently vital to know this before surgery so that you can get your body back to 'normal' before surgery if the tumor is secreting.
Have you had surgery?
How big is your para?

My tests at Mayo last Aug revealed no hormonal involvement. Seemed strange to me, given my symptoms: horrid ear ache, feeling like I have mumps, extreme vertigo, on and off blurred vision (try to get a eyeglass prescription w THAT going on!), tightness in the right side of my neck at the tumor site, left tremor, intermittent headaches, anxiety, occasional flashing-lights migraines, and sore throat. Those were the symptoms in Aug last year. In the past 3 mos, I bow have high diastolic BP #s (systolic is fine), occasional nausea, sore shoulders, my right nostril starts unexpected extreme dripping w/o warning, pain in my right flank clear thru to my front lower abdomen and sciatica, and have developed a painful ganglia on my right wrist joint. Crazy. Thanks for sharing your symptoms.

@gangcarotid1 So weird about the nose dripping!!! I also have that...it is so weird and embarrassing but just one of many symptoms - I share almost all your symptoms apart from flashing lights. I have surgery scheduled for removal and just hope that having it out will eliminate these symptoms but no one is able to confirm that...

Mind-boggling... huh!
Looking forward to comparing our progress process through this! Like you, I'm wanting these bizarre mix of symptoms to just Go Away after the tumor removal, but no verification given to me either. My kidney tumors they removed in Oct were tied to the paraganglioma; best way they could tell was, my high BP went away. However, 3 mos later, the diastolic part of my BP started jumping.
Tiring of all this; I just want my life back. Best wishes to you and your family on this expedition.

@fas when is your surgery scheduled? Recently, you'd hoped "4-5 weeks" wait?
My experience w Mayo is, very responsive... they were ready to schedule my partial nephrectomy last Fall less than 2 wks after diagnosis. We waited 1 more month because my husband had already delayed his torn rotator cuff surgery for me, and I finally talked him into scheduling it.
We were quite a picture in the airport a few wks later, him w a broken wing pushing me in a wheelchair due to my vertigo.
Were ready for the next expedition now.
Sorry to rattle on; just excited to find someone else in the same lifeboat as me! When is your surgery?

@gangcarotid1 I agree Mayo is very responsive, I was thinking end of April but actually they let me know 2 days ago that my surgery is April 2nd! So, it's exciting and not yet scary (I am sure I will have a freak out the day before!!). Just trying to focus on eviction of this unwelcome trespasser and getting back to 'normal' although as we both agree this is TBD...
I STILL have a hard time wrapping my head around the fact that not only do they (doctors) think it is not secreting they also believe all my 'symptoms' are not linked!!!

I guess we will soon find out....

Anyway, I agree it is lovely to communicate with someone else in this situation. Thanks 🙂

I actually expected them to surprise you with a surgery date sooner than 4-5 wks away. 😀
Most of what I've read includes info about these 'trespassers' secreting, yet my Mayo drs also don't believe it's secreting, and they also don't believe all my symptoms are related (some, but not all).
I'll definitely be telling my drs when I see them in April that you and have the same symptoms, just that your tumor is on the left side; mine's on the right.. w/b food for thought for them I'll bet.
I am curious where you live, are you male, female, age, etc.? We live in Northern Idaho, but during the winter months my husband & I have a home in the Yuma Foothills. I just turned 69; my husband's 72. We don't like the cold; enjoy 4-wheeling out in the desert, and the laid-back mode of all the other retirees down here.
Was thinking w you mentioning Swedish, Fred Hutch, and Scottsdale Mayo, you must not be a New Englander?

@gangcarotid1 No not a New Englander! But both my husband and I are British!! We immigrated here with our 3 kids in 1998. Currently live in WA, I'm 58 and my husband is 64.

We're heading home to north Idaho for the summer and fall mos; will arrive home on your surgical date. Will be thinking of you! If you ever get over to northern Idaho (Coeur d'Alene area, give a holler. Would be cool to meet sometime afterward (compare battle wounds?🤭)