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First Bite Syndrome

DaveJay's picture
DaveJay
Posts: 8
Joined: Dec 2013

I am curious if anybody else has experienced this or knows anything about it.

Ever since my Extended Radical Neck Dissection surgery in December, I have been experiencing First Bite Syndrome.

It involves the first one or two bites of food at every meal, which triggers an intense, almost painful, sensation in the lower back corner of the mouth.  It is somewhat similar to the sensation when you bite into a lemon, but off to the side of the mouth.  It has been getting a bit more intense as my recovery from the surgery progresses.

It is odd in that water and thin liquids usually do not trigger it, but thick fluids, like yogurt do.  Or, of course, anything solid.  I have to just bear through those first 5 or 10 seconds, and then it goes away and I can eat normally - even though it is my new normal of small bites and careful chewing.

If I take a respite from eating for 10 minutes or so, then I have to endure this again when I resume.

My doctors say that this is rare, and some have only in the last few weeks become aware of it.  Google searches don't turn a lot up, but what is there indicates that it is related to surgery in the parapharyngeal space, but the actual cause is not understood.  And there does not seem to be a good treatment for it.

Anybody else run into this interesting torture technique?  It certainly puts a damper on snacking (which is not a bad thing, in my case).

Thanks,

DaveJ

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

Nope, with all the afflictions i have had, somehow I have missed this one.  I have very significant facial and jaw spasm, onset a year after my second radiation.  Probably twenty times a day, it absolutely glues my mouth shut.  But it doesn't hurt much,  its more a nuisance, and it is nothing like you describe.  I did  a google search, as I honestly have not heard of this before.  And I'm pretty sure this has not been discussed here in the last couple of years.  Twill be interesting to see who else is bothered by this.

 

Welcome to the club.

 

Pat

hwt's picture
hwt
Posts: 2321
Joined: Jun 2012

I had my lower mandible replaced and neck dissection 01/2012 then rads and chemo. Not what you explained but for a year and a half. everytime I ate anything, my mouth, on the surgery side, swelled. As I continued to eat, the swelling lessened. Still an issue but recent improvement seems significant. Maybe a version of what you are dealing with???

Candi

CivilMatt's picture
CivilMatt
Posts: 3486
Joined: May 2012

DaveJ,

I did a Bing search and got a few hits.

Sorry for your pain, the rest of your condition I identify with (eating).

Matt

dlygoblue's picture
dlygoblue
Posts: 28
Joined: Mar 2012

Dave,

I am probably one of the few who knows exactly what you’re talking about, as I suffer (still) from First Bite Syndrome 2-1/2 years post-treatment. Neuroblastoma w/ endoscopic surgery and neck dissection (9 lymph nodels) on both sides of neck, chemo and rad treatment, all in 2011. Pain exactly as you describe in lower left jaw area. Pain subsides after a minute or 2. I haven't found much research on it, and in fact, it was the oncologist’s Nutritionist who provided me the diagnosis and name.  The syndrome substantially subsided after several months post-radiation treatment, but has never gone away completely. Doctors have recommended mouth stretching exercises. Sorry for the limited treatment info.  David L

DaveJay's picture
DaveJay
Posts: 8
Joined: Dec 2013

Matt, thanks for the Bing tip.  It turned up a few new hits, including a Student-Doctor/Patient forum where lots of folks, patients, chimed in on this.  All desperately wanted to know how to relieve this condition.

It appears to be related to the initial autonomic salivation response we have when first start eating.  In fact, some times, just thinking about food can trigger it, just like Pavlov's dogs.

In some cases, once radation starts damaging the salivary glands, it goes away or diminishes.  This is my current hope - my silver lining in the thunderstorm of radiation facing me.

As I am beginning to learn, with any of these kinds of side affects, there are many folks who have more difficult symptoms, some who have an easier time of it, and a few poor souls who just have the very worst.  For one fellow, he has this spasm through his entire meal, every meal for years and years.

David L, thanks for your insight and experience.  It sounds like yours lasts longer than mine currently does, but I am still in the early stages of this.  Do the mouth stretching exercises actually help?

Thanks everybody else for your comments and support. 

DaveJ

Stevedds
Posts: 1
Joined: Aug 2014

i had a modified radical neck after diagnosis of tonsil cancer. I developed first bite syndrome. Damn did it hurt when you started your first bite. Northwestern said they have seen very few. Actually two me and one other patient. They have been treating it with botox. I am kind of their first experiment literature says. 70mg. They have given me 20 in two separate appointments 10 at a time. They were to scared of complication so they wanted to titrate out the dose. It has worked. Still have it but nothing like before. I kept thinking they had broken the condyler process of my right jaw, until the surgeon told me about it. 

 

A lighter note. The other patient was a women. She was over 70 pounds over weight. She lost those 70 and a few more. She did not want any type of treatment. It took care of her in between meal snacking perfectly. And she felt she was blessed. 

Lucky75
Posts: 1
Joined: Aug 2015

Who knew such a thing existed. I have done nothing but learn about diagnoses and what they really mean for the last 6 months. Today, I was told I have FBS, and that "hopefully" it will pass as I recover. My pain is on my temple as I had my entire  right mandible removed due to Clear Cell Odonogenic Carcinoma.

 

Any tips on how to handle the pain. I try to massage my temple as I eat....but that really doesn't seem to help.

 

 

 

 

 

debbiejeanne's picture
debbiejeanne
Posts: 3093
Joined: Jan 2010

hello, lucky.  may i suggest you copy and paste your post into a new topic post so all will see it?  since this is an old post, some may skip over it.  i've never heard of this until i just read your post.  very interesting indeed.  i'm sure others could benefit from this info.

God bless you,

dj

Ebernstein
Posts: 1
Joined: Sep 2015

i encountered this about 2 months after finishing radiation to the lymph nodes around my jaw For NHL In June of 2014.   I had no invasive surgery, The doctors at Duke had never encountered it before. This week after research they found out about FBS and told me about it as the information reported here matches my symptoms.  So far nothing makes it better but heck, they think my lymphoma is cured so I can live with it!

Soupy89
Posts: 1
Joined: Dec 2015

Hi there

i was just diagnosed with FBS after it became worse over 2 years. I have never had any kind of surgery to my upper body and the Dr is very puzzled. I feel your pain, literally!

 

it is very embarrassing when out with groups of people as the pain can drop me to my knees

 

apparently any kind of treatment could be worse than the pain so we just all bear it I guess

 

Soupy89

mmt366
Posts: 41
Joined: Apr 2010

Hey DaveJ, i was diagnosed with SCC stage IV tonsil with lymph nodes and had the same surgery with chemo and rads. Surgery on 1/15/15 completed rads May 1. It's been a slow recovery with the usual eating and swallowing problems I read on this site, but I want you to know you are not alone, I have the exact issue regarding the painful sensation during the first bite, although for me it occurs on the 2 and third bite as well. And It happens every time!

I'm meeting my surgeon next month for a follow up and intend to ask for his opinion, which I will share with all.

On a positive note, I was NED back in October and fully expect to be again after my upcoming January scans. 

Wishing you and everyone on this site a happy and healthy 2016.

mmt366

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