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Hi, I have a Paraganglioma on the carotid artery (left side). Specifically it is 3cm and is at the bifurcation of the artery. I have visited and spoken to surgeons at Swedish (Seattle), Fred Hutch (Seattle) and Mayo (Arizona). Of those three doctors 1 wanted to embolize the day before (Swedish) and the other 2 told me that they would not embolize. I spent some time researching this myself and found two medical papers detailing studies on whether or not embolization was advantageous. In both studies the conclusion was that the results of the removal of the tumor were not affected by having or not having an embolization.
I felt that the surgeon at Swedish was a little too casual in his attitude towards my surgery and seemed to treat it as 'routine' telling me he always embolizes the day before. The surgeon at Fred Hutch was very efficient and professional but a little too clinical for me, although her treatment plan was the same as the final doctor I met at Mayo - I really liked him. Very experienced and very willing to take the time to explain everything. When I asked him about embolization his response was 'there is a 3 percent risk of stroke with embolization and I don't consider that it is a risk worth taking'.
So, this is my experience to date and I hope you might find it helpful.
FYI I will be having this removed by the surgeon at Mayo as soon as I get my date, hopefully 4 - 5weeks time.

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Replies to "Hi, I have a Paraganglioma on the carotid artery (left side). Specifically it is 3cm and..."

Hello @fas,

It looks like you have a good medical team in place at Mayo. As @gangcarotid1 said, I would also be interested in hearing from you again as you prepare for this surgery.

Will you continue to post?

@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