First Bite Syndrome after unilateral Carotid Paraganglioma surgery.

I haven't had the surgery yet I my left jaw is doing the same but I'm not eating it will just start hurting and start doing what u were talking about. I just take ibuprofen and Tylenol but I just discovered my tumor and want surgery done.

Have you have a chance to see how bif the PG (paraganglioma) is? Mine was not terribly big, only 3.1-3.5-3.0cm. Carotid and Vagal. Vagal part we learned during the surgery.
Is you paraganaglioma on the left side as well?
When you get the first bit pain, does your ear pop or feels like you have an ear ache? According to cleveland clinic getting a first bit syndrome without a surgery is rare. Keep looking. Maybe there is something there, it is pushing or Vagus, Superior Larengial, or nerve #11. Maybe even gland behind your lower jaw? I will be looking at anything to help my condition better. Only difference here is I got a two weeks old 6 inches scar from Carotid /Vagal paranglioma and seven lymph nodes being removed.

They said it's 3 cm and there might be another behind it. I do have all my teeth removed. They told me my gums are infected so eventually they all got to come out. Plus I had nerves problems my whole life where at the age of 22 they said I had arthritis

Thats an interesting point. I have a few bridges, from hockey. Anchor teeth under the bridges started to crumble and break under the bridge. Good friends of mine had a lymphoma, early diagnose, they pulled a bunch of his teeth as well. Something about head/neck tumors or cancers and teeth not getting along.

I had them pulled first it's been 2 years now I just found out about the tumor around the summer end I have 3 and my oldest bday is August and my youngest is July and this is the end of November and to them it should have been out cuz it deals with the calcium and it being 2 cm already. Calcium pills that's all they give me. I don't do treatments or anything like that. I had my cutting through my years. But there are some when u hear 99.99 most not all say it's the worst thing I have done due to what needs to be done. You can count more of no it really help me on your hands then the ones that say the I should have just dealt with the problem.

@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?

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!

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.

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.

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?