← Return to First Bite Syndrome after unilateral Carotid Paraganglioma surgery.

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@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.

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Replies to "In '92 I was diagnosed with Stage IV Non-Hodgkin's Lymphoblastic Lymphoma (Diagnosed at age nine). The..."

Welcome, @jtaylor14955. It gives great hope to hear from a stage IV survivor 30 years out! Did you have other treatments besides surgery? Was it this discussion that first introduced you to first bite syndrome or how did the symptom you were experiencing come to finally be labelled as FBS?

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.