Femoral catheterization before carotid tumor removed?

I read my past notes, and need to add, there was no meningioma! Yay! They watched the lung spots for a year and have decided no worries; are unchanged and likely remnants of an old infection years ago. Second Yay!

Oh I am so thankful for this rare diagnostic group!!!!
I have had a whirlwind of a year of strange symptoms and for an entire year kept trying to find solutions and different Drs for my condition. I was diagnosed after colon cancer, when I was cleared a follow up PET showed something glowing in my skull base. I saw Dr Michael Hinni in 2013 he said leave it alone for now. Fast forward to last year a lump appeared on my neck, physicians thought it was lymphoma, but after a year of diagnostics and specialists thinking is it one or two tumors, one converging into the lump in the neck, biopsies (even though they arent supposed to be biopsied because they are so vascular), I did anyway. I am now at my last two Dr consults Dr Stieg at Weil Cornell and Dr Michael Hinni who I hope will tell me some good news and help me. my symptoms are heartbeats in my ear, tipping over randomly and hitting my head, (I went out on disability because the symptoms were affecting my ability to focus and I was so unstable it wasnt conducive to fast paced dermatology and surgeries) Painful tinnitis, throbbing in jaw ear neck, which affects sleep, major migraines, I have numbness in my fingers but Stieg thinks its cervical disc issues from osteoarthritis, Im 54 and offended ;} So in a few weeks I see Dr Hinni and I believe he will tell me like I am his daughter or his wife, and if he doesnt, I plan on phrasing the question that way. How would you treat me if I was...
Stieg said embolize, I never knew there was an option not to embolize. I have a carotid body tumor that bifurcates the carotid artery and jugular vein about 4.3 3.2 4.1 after radiation at Moffit it knocked it down a cm, not good enough for me, but it seems like nobody wants to touch it. Stieg said to remove the entire tumor, from skull base to carotid/jugular he would have to remove my mandible and leave me with the inability to shrug my shoulders, which could be a complete lifestyle change for basic function like getting dressed to using a computer to playing ukulele, to dancing. Im not sure if its recommended to remove the thing in its entirety, I know that I have high VEGF factor paired with some other genetic issue that spits out red blood cells at a rapid pace and then the special ability to make them cluster on top of that so........thats the only reason why I would try to go for complete removal but still risky. Im 54 and have bronchiectasis, am a cancer survivor and wonder how I will be saved this time by the powers that be and the choices I make. Can anyone on this platform help me with any decisions? I am so sorry for the catheterization nightmare, I always wondered about that twilight drug where they need to keep you conscious, I would have PTSD from that experience. Im so grateful to be part of the mayo clinic connect. Is there anything that anyone would tell me if they knew before going through procedures??? I appreciate any help or guidance at all. Many thanks, Tara

@fas
Hello Paraganglioma warrior!!!! I just read your post and wonder how your surgery went without the embolization??? I don't like the stroke risk factor either but it seems that Dr Stieg at Weil Cornell also believes in embolizing first, it may be necessary as he said he may have to graft the carotid and jugular as my tumor not only bifurcates but is integrated into the vein and artery so blood loss is par for the course. May I ask you about your surgery and how it went if you remember anything and how you are now? did they remove all of it or some of it? I don't know of anyone that has it in their skull base and a carotid body tumor. Any help or advice would be appreciated as I make my way to Mayo in AZ in a few weeks and follow up with Dr Stieg at Cornell in NY.
Many thanks,

Tara

@taracronwall
Dr Hinni at Scottsdale Mayo is the counterpart to my surgeon Dr Moore ar Rochester Mayo. A person I met on Mayo Connect had her CBT removed by Dr Hinni and all went very well. She did not have the embolization pre-surgery. She did have some slight drooping, but she was quite pleased and relieved with the outcome. There are various reasons some drs do and some drs don't do embolizations. If you are seeing Dr Hinni at Mayo, ask him all your questions! He'll answer everything to your satisfaction. Best wishes and hugs!