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@56pan
Carotid body tumor.
They are rare, I had a parapharangeal ganglioma at my skull base backing 2012 Mayo in AZ said come back when you have more severe problems symptoms like you can’t swallow anymore. Well over the years that’s happened, I e adjusted but this year a lump appeared and it took a lot of different doctors and diagnostics to diagnose me with a carotid body tumor bifurcating the carotid artery and jugular vein, which kind of sucks because of how dangerous a resection can be grafting veins🥴 but it’s causing all kinds of problems, the heart racing and rapid deep pulsing dizziness ripping over splitting my head crying g outbursts ear popping g clocking swooshing migraines vision weirdness choking on food memory problems high blood pressure spikes when mine is usually normal low. All doctors are telling g me to just watch and wait but it’s already grown 1.5 cms bigger after radiation. I have a lump on the right side that has been growing since the beginning of the year from mm’s to cm’s now that most docs have chalked up to a lymph node or a submandibular gland but it keeps growing. 🤦🏻♀️ signed up for clinical trial for Lutathera to see if I can shrink these tumors before they get out of control and also if it works surgery can be a lot less risky if the tumors are smaller.
Replies to "@56pan Carotid body tumor. They are rare, I had a parapharangeal ganglioma at my skull base..."
@taracronwall
The day before I had my paraganglioma removed at Mayo Rochester, they did a femoral vein embolization, also embolization in the artery in my wrist.one embolization had a coil the other was the 'driver'. I was under conscious sedation (they called it conscious gentle sedation, but nothing gentle about it. I was groggily awake thru it all. They did this to reroute the blood supply away from the tumor, yet still provide adequate blood to my brain. They asked me various questions thru the process of moving the coil up thru my abdomen, thru my heart, thru my neck...all of which I could feel moving... questions like, What city are we in, What is your husband's name, Wiggle your right smallest toe, Repeat these colors...etc. to make sure the reroute would not affect my brain function. I know some folks who've had a CBT removed in their neck w/o this being done, and they ended up w drooping facial muscles, or drooping eyelid, or slur in speech. I have none of those things. Just sayin'...
@taracronwall
Hello, it’s mid April 2026, and would love to know how all of us with a paraganglioma right neck in the “Y” are doing? Prayers for everyone and hope for the best!
I’m in Watchful Waiting, as 76 years young, and my 5 cm benign tumor just showed up last year!
Thanks for everyone’s notes and support, means a lot! Breast surgery fall of 2013 Mayo Rochester, and they are awesome! Hugs, Suzanne
@taracronwall Hello! I also have a Paraganglioma, Carotid Body Tumor, on “watch and wait”
Where did you find the Clinical Trial, at Mayo MN?
Thank you!! Hugs!
Suzanne
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@taracronwall Thank your for that good explanation.