1. < Neuroendocrine Tumors (NETs)

First Bite Syndrome after unilateral Carotid Paraganglioma surgery.

Posted by coachv @coachv, Nov 23, 2023

Happy Thanksgiving everyone. Two weeks after Carotid/Vagal paraganglioma surgery. Tumor was active, very episodical at that. After the surgery I have developed what is called a First Bite Syndrome. First bite on the side of the surgery feels like your lower jaw is broken and your ear drum is raptured or popping. After chewing very very slowly on the other side it gets easier. If you stop chewing for a few minutes, it will be painful again for the first few bites. Altoids are a form of torture, anything sower or spicy triggers it as well.
Has anybody had it or has it? If lasting more than six months, have you tried anything?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

coachv | @coachv | Dec 7, 2023
In reply to @mermaid7272 "I had a "Spit Gland" removed about 10 years ago. It was in my neck/ jaw..." + (show)
@mermaid7272

I had a "Spit Gland" removed about 10 years ago. It was in my neck/ jaw area. Surgery was for a pre-cancerous tumor in a Parotid gland. Doctors in this particular hospital system were lax in information and care, and still are!

For about a year I had that "First Bite" thing that drove me nuts! Eventually it went away, but even today I still have an occurence (sp). It only lasts a minute or so. It's usually brought on by eating some sort of berries.
It's nothing more than a minor annoyance.
That's all the info I have about it, except that the area of surgery is still very numb yet tender as nerves were cut below my ear.

Jump to this post

10 years ago and the area is still numb? Wow. Not something to look forward to. In my case they also had to remove seven lymph nodes. I ended up with a 6 inches scar. Pretty big opening. Do you remember if sour and spicy foods triggered it too?

REPLY
1 reply
coachv | @coachv | Dec 7, 2023
In reply to @jtaylor14955 "In '92 I was diagnosed with Stage IV Non-Hodgkin's Lymphoblastic Lymphoma (Diagnosed at age nine). The..." + (show)
@jtaylor14955

In '92 I was diagnosed with Stage IV Non-Hodgkin's Lymphoblastic Lymphoma (Diagnosed at age nine). The tumors were located on the back of my head and left side of the neck. I had biopsies to remove one tumor on the back of my head and one to remove a tumor just behind and below my left ear. I don't remember immediately having FBS during treatment, though it's possible I did and have just been brushing it off. I know I've had it since the late 90's and have assumed it was part of my tinnitus. I am just now learning (2023, 30 years later) that it's FBS. Its occurrence is random. Maybe several times a week, maybe a few times a month. Almost always triggered by something sour/tart, other times anything. It will last 5-15 seconds then will not occur again for days or weeks.

Jump to this post

30 years is amazing. Wow! I am in the fifth week :-). First few bites, bigger and harder the byte more pain it causes. Anything sour or spicy is terrible. Keep chewing and it gets better after 10 - 15 seconds like you said. Altoid mints could be used as torture devices.

REPLY
coachv | @coachv | Dec 7, 2023

Looks like there are no common treatments for the FBC (first bite syndrome). One person mentioned that some people tried botox injections, I think they inject it right into your parotid gland.
My surgeon at MD has never done heard of anybody that tried it. ENT at Mayo I consult with have never prescribed it either for FBC. It sounds very painful, probably more than first bite itself.
Is that some miracle treatment? Any experiences?

REPLY
mermaid7272 | @mermaid7272 | Dec 8, 2023
In reply to @coachv "10 years ago and the area is still numb? Wow. Not something to look forward to...." + (show)
@coachv

10 years ago and the area is still numb? Wow. Not something to look forward to. In my case they also had to remove seven lymph nodes. I ended up with a 6 inches scar. Pretty big opening. Do you remember if sour and spicy foods triggered it too?

Jump to this post

A nerve in that area was cut, and the "surgeon" told me that it would be permanent. I also have a large scar on my neck, but not as big as yours! I don't enjoy spicy foods, but sour and especially berries still trigger the first bite. Strawberries, blackberries and other types are annoying.
There are much worse medical problems, believe me! Good luck, it will be better in time.

REPLY
View MoreView Less
Please sign in or register to post a reply.