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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
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'...

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Replies to "@taracronwall The day before I had my paraganglioma removed at Mayo Rochester, they did a femoral..."

@gangcarotid1
I thank you so much for telling it like it is, not sugar coating anything, it worries me but if it helps outcome later, I can imagine more horrific dental procedures that Ive been through. I worry though that i might cough because I have bronchiectasis and anyone that has this knows in a cold environment its like eating ice cream too fast and having to cough and drowning in your own mucous if you lay down flat. How is this supposed to go for me? I dont know Im very scared about this more than the procedure, but I do know the risks. I assume I will have to do the cerebroangiogram and the embolization to prevent stroke and or bleeding out. Ive had the skull base tumor since 2012 and the carotid body appeared last year fast. what is your swallowing function like and have any of your symptoms that the CBT gave you subsided at all? Thank you for your feedback.