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← Return to First Bite Syndrome after unilateral Carotid Paraganglioma surgery.
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First Bite Syndrome after unilateral Carotid Paraganglioma surgery.
Neuroendocrine Tumors (NETs) | Last Active: Dec 8, 2023 | Replies (14)Comment receiving replies
@coachv, I'm tagging fellow members @sharik @puddknocker @hdanielle62000 @labgirl57 who have either carotid or vagal paraganglioma, some of whom have had surgery.
I have to admit that this is the first time I've heard of first bite syndrome (FBS). Although it is associated with upper neck surgery or tumor of the parotid salivary gland or parapharyngeal space, I don't recall members of the head and neck cancer group talking about it.
It sounds like you've learned some strategies to deal with it like avoiding sour and acidic foods, chewing on the opposite side, etc. I've read that it often goes away with time. Have you noticed that the pain is lessening as the days go by?
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Thank you Colleen for everything you do!
It has been 20 days since the surgery. To clarify I had a 3.1cm Carotid Body Tumor removed, it partially wrapped around Vagus nerve. It also touched Superior Laryngeal nerve and nerve #1.
Going into the surgery I had secondary diagnosis of metastatic lymphoma. They took out seven lymph nodes from this area. Counting my blessings, all seven tested negative. Only party pooper was the carotid body.
I feel like with numbness in the general area letting off a little every day, discomfort in general has gotten worse. For the first bite syndrome, it feels the same. I am getting more aware to put food in the right side, take smaller sips and bites, etc. I forgot another day and took an Altoid mint. It felt so horrible and painful I had to spit it out that same instance. Funny learning moments.
I have been reading about some folks with FBS using botox injections right into area of parotid gland.
I asked my ENT surgeon at MD Anderson and he said he does not do it to any of his patients.
Also, I need to mention, my cut is almost six inches log, Big scar. For a 3.1cm tumor, he said they had to immobilize five nerves total plus the lymph nodes. This may make my case little different from other carotid or vagal. Not matter the case, we shall overcome. All good!
Thats about sums it for now. Thanks you!