First Bite Syndrome

DaveJay
DaveJay Member Posts: 8 Member
in Head and Neck Cancer #1

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

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    wow Dave, just wow......

    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

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    Oh my

    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

  • hwt
    hwt Member Posts: 2,328 Member
    #4
    longtermsurvivor said:

    wow Dave, just wow......

    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

    Dave

    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

  • dlygoblue
    dlygoblue Member Posts: 28
    #5
    Dave,
    I am probably one of

    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
    DaveJay Member Posts: 8 Member
    #6
    Further Info on FBS

    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
    Stevedds Member Posts: 1
    #7
    First bite syndrome

    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
    Lucky75 Member Posts: 1
    #8
    First Bite Syndrome

    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
    debbiejeanne Member Posts: 3,102 Member
    #9
    Lucky75 said:

    First Bite Syndrome

    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.

     

     

     

     

     

    hello, lucky.  may i suggest

    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
    Ebernstein Member Posts: 1
    #10
    Lucky75 said:

    First Bite Syndrome

    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.

     

     

     

     

     

    FBS

    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
    Soupy89 Member Posts: 1
    #11
    First bite syndrome

    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
    mmt366 Member Posts: 41
    #12
    Me too!

    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

  • Sherry2
    Sherry2 Member Posts: 1
    #13
    First Bite Syndrome

    Dave - I have to have my parotid gland (saliva gland) removed.  When they did the biopsy, they froze the parotid gland.  When I went home, I took something to eat and the pain just about put me to the floor.  So I waited until the freezing came out, and it was fine.  I'm reading now that after the surgery, I could have First Bite Syndrome forever!!  I sure hope that's not true.  

     

  • sliderdj
    sliderdj Member Posts: 1
    #14
    First Bite Syndrome

    2UDYQV

    I struggle with this meal. Doc says maybe botox. First ten or twenty bites are real bad. I use an ice pack just to get over the hump...it works. 5 months out of tongue reconstruction and 44 lymph nodes removed. Might get better he says. Will update soon.

     

  • Cjayflo
    Cjayflo Member Posts: 1
    edited October 2017 #15
    I have this after they

    I have this after they removed a tumor in my retro pharyngeal space. At first the pain made me scream it hurt so much. It really took me by surprise. We tried a lot of stuff but finally got on Gabapentin. It helps some. Cymbalta was added and it helped a bit too. What REALLY DOES HELP is Doxepin Hydrochloride oral solutions. 10 mg per mL. I mix it with water and do a rinse or swish it on the left side of my mouth and it numbs it up good. 

    Ive also had pain of the trigeminal nerve going into my ear and along the upper branch. They did an injection and that numbed the lower branch. 

  • Curlyn
    Curlyn Member Posts: 189
    #16
    Yes Dave, it's real. My

    Yes Dave, it's real. My surgeon knew exactly what I was talking about. Mostly triggered by anything citrus, tangy or spicy. And when it initialled began for me, it was intense and painful. It has dissipated somewhat for me now, however, I was told that botox could be done to treat it if it is a problem down the road. It is caused by parapharyngeal space surgery, as you said.

  • JBBW
    JBBW Member Posts: 30
    #17
    had it....it's less now

    Chemo and Radiation for throat cancer.  After finishing up both treatments I started having this a week or so later.  It still happens if it's something with citric acid.  It was happening with everything and for more than just the first bite though for awhile. 

  • utfandg
    utfandg Member Posts: 6
    edited July 2018 #18
    more good information

    Actually my Doctor wrote papers concerning first bite syndrome in 1998.  All of the salivary glands respond 100% causing the spasm in the jaw. I am starting Gabapentin this week at 100mg three times daily. Next week increasing to 300mg three times daily. I will also be involved in a clinical trial. Will update as I progress. Below is some good information I copied from a link:

    This paper was the only article on this subject until 1998, when a North American otorhinolaryngologist, Dr. James L. Netterville [2] again used this term. In an article devoted to paragangliomas of the vagus nerve and their treatment, Netterville described an early postoperative pain syndrome (totally unrelated to the clinical features described by Haubrich [1]), characterized by sudden onset without prodromal symptoms, at the first bite, of pain or severe cramping in the ipsilateral parotid region. The patient may even avoid eating due to the severity of this syndrome. The pain, which gradually resolves with the following mouthfuls, recurs at each meal and is accentuated by the use of sialogogues. In all cases of the series reported by Netterville et al. [2], this syndrome was associated with a lesion of the ipsilateral cervical sympathetic trunk lesion. However, well before this publication, Gardner and Abdullah [23], in 1955, had already clearly described these symptoms in a study that analysed the differences between pre- and postganglionic cervical sympathectomy (superior cervical ganglion) in the treatment of certain vascular or atrophic brain lesions.

    Following this publication by Netterville et al. [2], several papers concerning first bite syndrome [3], [4], [5], [6], [7], [8], [9], [10], [11], [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22] (Table 1) reported sudden onset of intense head and neck pain in the parotid region, with no prodromal symptoms. Pain was triggered by the first bite and then gradually resolved with subsequent bites. However, several clinical variants were reported. For example, the syndrome can occur several months rather than several days after upper neck surgery [4] and the pain can also be located in the mandibular region or oral cavity and radiate to the ear [12]. Some authors [11], [13], [14], [18], [20] have reported that pain can also be triggered by salivation, simply thinking about a meal or by simple contact with various foods even in the absence of chewing. An associated cervical sympathetic trunk lesion was present in only 42.8% of the 112 cases published (Table 1) since the article by Netterville et al. [2]. Two main aetiological classes can be distinguished: postoperative syndromes and tumours. More than 95% of published cases correspond to postoperative syndromes [1], [2], [3], [4], [5], [6], [7], [8], [9], [10], [11], [12], [13], [14], [18], [19], [20], [21] (Table 1) following upper neck surgery (resection of mixed and/or cervical sympathetic nerve tumours, deep cervical lymph node dissection, parotid gland surgery, particularly involving the deep lobe of the parotid gland, parapharyngeal and infratemporal fossa surgery, carotid bifurcation and/or internal carotid artery surgery, resection of the styloid process). Tumours responsible for first bite syndrome were malignant in all cases arising from the deep lobe of the parotid gland, parapharyngeal space or ipsilateral submandibular gland and, in a few cases, the tumour was detected on conventional imaging only several months after onset of the pain [15], [16], [17], [22].

     

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