@56pan
Hello I just found this forum. I believe CBT stands for carotid body tumor. I had a paraganglioma found in my skull base in 2012 Mayo in AZ said don’t do anything, this year I had swelling in my neck and severe symptoms falling over splitting my head, dizziness headaches memory problems popping swishing in my ear heartbeats rapid pulse episodes and pounding in my chest that was very uncomfortable throbbing in my neck. So Tampa General said no surgery you will be paralyzed in some capacity, Mayo said I’m fine😔 I had radiation on my CBT it grew 1.5 cms and now I have another lump in my right neck that has shown up on scans since January I creasing in size even thoughts are saying g oh it’s nothing a lymph node or submandibular gland. Well it went from mm’s to cm’s and I want to know if I am one of the 30-50% that have bilateral tumors. I talked with Stanford and they said watch and wait for a year. No thanks. I have an appt with UT southwestern in Dallas and i plan on going back to Mayo in AZ to see what their opinion is, in the meantime I read up on Lutathera for benign tumors to shrink them to make the surgical outcome more favorable. Any help is appreciated and if I can help anyone here we have to be sure our co Siri on is so rare no Dr seems to know how to deal with these and we wait and more problems occur. 🙏💞

@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.

@56pan
Carotid body tumor