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Anyone have a paraganglioma?

Neuroendocrine Tumors (NETs) | Last Active: Jul 25 3:44pm | Replies (54)

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Profile picture for gangcarotid1 @gangcarotid1

@taracronwall
Can you please send the link to the vascular surgery journal saying these are bilateral 30-50% of the time? I had my CBT on the right side bifurcation removed by Mayo Rochester July 2025. Head and neck cancer surgeon on the surgical team said my carotid arteries did a weird 'loopty-lou', but not 'significantly' retropharyngeal. Confusing to me, because its path is either behind/in back of the throat or its not?! I still have a globus sensation now nearly 6 mos after resection of the tumor. Additionally now BOTH sides of my throat are sore w some lumps (I suspect lymph nodes; they took 1 large benign lymph node when they took the
tumor). My non-medical logic tells me the 'loopty-lou-ing' indicated the CBT was working at becoming bilateral. Everything I've read says very few have these neck CBTs on both sides, so I'd be interested in that vascular surgery journal link. Have been back to Mayo post-op and a throat scope done showing no obstruction, though it feels like a (growing) wad of gauze was left behind. Keeping them updated through Epic MyChart every 8 wks. Mid-Jan I'll have to tell them its now on both sides (pain, lumps, ear pain).
Thx for sharing, and best to you!

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Replies to "@taracronwall Can you please send the link to the vascular surgery journal saying these are bilateral..."

@gangcarotid1

I had it in my random my laptop but lost them somehow 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️I’ll do a deep dive to see if I can dig them up. I think I was looking into paraganglioma with carotid body tumor bifurcating carotid and jugular. Then the bilateral patient was found showing the lumps in her neck and the surgical intervention. Give me some time to do some digging, and it’s good for my oncologists who don’t know the stats on these tumors.