1. < Neuroendocrine Tumors (NETs)

Was it difficult to determine if your paraganglioma was active?

Posted by fas @fas, Feb 12 1:40am

I have a 3cm Paraganglioma in the Carotid artery of my neck. Just over one month ago I went to ER as I knew something was seriously wrong - extreme dizziness, nausea, severe headache, abdominal pain, numbness in right arm and fingers. As a result of my insistence that something major was wrong and after many doctor visits and imaging the Para was found.
The next step apparently is to determine if it is active. My blood plasma test came back negative for metanephrines and I am still waiting for the results of the 24 hour urine test.
With all my symptoms - surely it must be active though?!!
How can I prove it is active?
Are there any other tests?
I would appreciate any advice

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Colleen Young, Connect Director | @colleenyoung | 3 days ago
In reply to @fas "@gangcarotid1 I agree Mayo is very responsive, I was thinking end of April but actually they..." + (show)
@fas

@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 🙂

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@fas, I just read that you had surgery yesterday. Just wanted to let you know that I'm thinking of you as you recover. I look forward to hearing your update when you are willing and able.

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1 reply
fas | @fas | 2 days ago
In reply to @colleenyoung "@fas, I just read that you had surgery yesterday. Just wanted to let you know that..." + (show)
@colleenyoung

@fas, I just read that you had surgery yesterday. Just wanted to let you know that I'm thinking of you as you recover. I look forward to hearing your update when you are willing and able.

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@colleenyoung Hi Colleen, Thanks so much for reaching out. My surgery has been delayed for three weeks - new date now April 27th with Dr. Hinni at Mayo Clinic in Arizona! I feel very confident in him, it was disappointing to have to wait another three weeks but such is life. Just ready to have the Para removed and get back to 'normal' ! I will certainly keep you updated.

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1 reply
gangcarotid1 | @gangcarotid1 | 1 day ago
In reply to @fas "@colleenyoung Hi Colleen, Thanks so much for reaching out. My surgery has been delayed for three..." + (show)
@fas

@colleenyoung Hi Colleen, Thanks so much for reaching out. My surgery has been delayed for three weeks - new date now April 27th with Dr. Hinni at Mayo Clinic in Arizona! I feel very confident in him, it was disappointing to have to wait another three weeks but such is life. Just ready to have the Para removed and get back to 'normal' ! I will certainly keep you updated.

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So good to hear from you, @fas ! Am sure it was a bummer to have your 'eviction of the trespasser' delayed. My flight to Rochester is at the same timeframe as your surgery; will be having the CT scan to see how my tumor has changed, the same day you are scheduled for surgery. Thank you for sharing the name of your surgeon; my triage team of drs at Rochester are Dr Bancos--endocrinologist, Dr Link--vascular neurosurgeon, Dr Moore--head & neck surgeon. I definitely will be telling them about the striking match-up of all your & my symptoms, right down to your left nostril dripping and my right one dripping, w your carotid tumor on the left and mine on the right! Wishing you calmness in the interim, and thinking and praying for you and your family everyday.🥰

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gangcarotid1 | @gangcarotid1 | 1 day ago

Clarification: there are several 'Dr Moore' at Rochester. My Dr is Dr Eric Moore.

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