Post-op complications / is it First Bite syndrome or something else?

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2 months since surgery. Wondering what other painful issues people get from the styloicectomies that are similar to First Bite Syndrome, without FBS actually being the main issue. I have pretty severe pain when eating, and even though the start of the meal is the worst, it keeps on going, and the pain is so fatiguing and also worsens the main symptom(headache). I can be out for like an hour after a meal. Could it be other things, and not just FBS? The pain is bad near the parotid gland, but maybe it is more directly linked to the fascial nerve, or is this not a thing? When biking the wind can even trigger some of the pain there. I would locate the sharp pain to this point approximately (see picture), and it goes from being a 10/10 with first bites literally hitting walls and stabbing myself in the hand to cope, to an intense pain ruining the meal, where every “new bite” is the worst part. I eat bland meals 2 times a day instead of eating 5-6 meals a day as before. I can’t really socialise, as this - aside from the actual meal being terrible - knocks me out and leaves me with increased headache/pain after. I’ve been taking gabapentin for 25 days, and I am in line to get botox if I want, but afraid it is not “just” First Bite syndrome. I’m not sure what the other possible “syndromes” could be, if any?

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Any thoughts?

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This pain is related to the nerve damage caused by the surgery. Your digastric muscle was removed, and it takes time—and a lot of it—for the pain to subside after such a major surgery.

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And I understood that Dr. Aghayev almost always dissects (cuts) the external occipital artery, which supplies blood to part of the muscles and the surface of the back of the head.This can also cause pain in the back of the head.

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I’m sorry that you’re experiencing this after your surgery, it sounds really grim…

First Bite Syndrome can go on for a quite a long time, and can be more than just the first bite, @loki I think is experiencing this too after surgery…

Or it could be nerve damage as @anon30378544 says, but I would guess the Trigeminal Nerve rather than the facial nerve, only because TN is well-known to be triggered by eating/ chewing, and as you mention the wind affecting it too, this is another common cause. So it might be worth trying a nerve pain medication for a while? They can take a little while to build up enough to work, and sometimes it could take a bit of juggling to find the right one for you, but I would think it’s worth a try.

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@IJVman - The glossopharyngeal nerve is the nerve that stimulates the parotid gland & which I believe over-fires causing FBS, however, I agree w/ @Jules that the FBS response could be affecting your trigeminal nerve as well thus causing facial pain more globally. I think both she & @anon30378544 are correct that you had nerve injury during surgery which will take more time to begin to recover.

Many of us have noted nerve pain increases, sometimes significantly, as nerves “wake up” after surgery especially when the nerves have been moved (i.e. causing nerve injury) during surgery. Nerves don’t like to be touched so it doesn’t take much for them to become over-reactive during recovery. Doctors don’t usually mention specific nerves they’ve had to move out of the way, but we can guess which ones may have been via our post op pain/symptoms.

You mentioned you’ve been on Gabapentin for 25 days w/o much help. That seems long enough for it to have begun to help if it’s going to. It may be that you need a higher dose, need to take it more often (i.e. 3X/day vs 2x/day - though you didn’t mention dose or frequency), OR need to try a different medication. @Jules & other members take Amitriptyline w/ good results. That’s another nerve pain medication you could try.

Nerve pain meds come in 2 categories - anti-depressants & anti-seizure medications. Gabapentin is an anti-seizure med. Amitriptyline is an anti-depressant so perhaps it’s different mechanism of affecting nerve pain would work better for you.

Our members have had mixed results w/ botox w/ some having worse nerve pain after an injection, some having no change in pain, & others having good pain reduction but usually it’s short duration.

Frustrating as it may be, it sounds like you may have to do some trial & error to find the right medication to give you at least some relief until your body gets on top of the pain.

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I’m 10 months out. My FBS was so bad I would fall on the ground involuntarily crying and screaming and couldn’t stand. After 10 months it’s still bad but much more tolerable. Things not related to eating would trigger my FBS pain, like taking a warm shower, or just smelling food, brushing my teeth, etc. I’m still super swollen. My surgeries were particularly complicated though. Hope you feel better soon. I’m still having a tough time after 10 months. Stay optimistic and be patient, I know it’s hard.

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Hi IJVman,

You say that you are biking :face_with_raised_eyebrow: . It has only been 2 months since you operation. The whole surgical site is in an active remodelling stage, nerves are waking up and remodelling as well.

To put all the odds in your favour I would stop biking just in case this is not helping the healing process. It could be squeezing the surgical site or creating local muscle strains. I wouldn’t be doing any physical activity that may be putting any strain on the surgical site or local muscles (or muscles elsewhere for that matter) at this very important remodelling stage. This will upregulate Transforming Growth Factor-Beta (TGF-β) causing scar tissue formation.

Just do what you have to do daily (without over doing it like carrying heavy shopping bags or a back pack full of books and a computer). Just walk if you are worried about your physical form. Leave the biking for a year, when you are well out of the remodelling stage especially for nerves that take so much longer to heal.

Seeing you are looking at having a botox injection I would also make sure that you regularly have a High-Sensitivity C-Reactive Protein Test. This hs-CRP blood test is a lot more sensitive than your regular CRP blood test which I hope you have had recently to compare it with your pre-op values and to keep track of the inflammatory response to surgery and your general well being (ie sleep).

If the botox works, you will be inclined to do too much too quickly as it will disguise the pain. By regularly having a hs-CRP blood check, it will be able to pick up any slight variations in inflammation in your body. You can regulate you physical activity accordingly etc…

I would also be very careful not to take any COX-2 inhibitors at this critical 2 month stage (ibuprofen, other NSAIDS (other than low dose aspirin which could actually help), curcuma, ginger…) even if there is a temporary improvement in your symptoms. These COX-2 inhibitors will block your own production of resolvins which is a chemical produced by the body naturally to resolve chronic low level inflammation permanently !.. Also eat your herrings regularly they will help to stimulate these resolvins to be produced :wink:

Emerging Roles of Resolvins in the Resolution of Inflammation and Pain

Resolution of Acute Inflammation and the Role of Resolvins in Immunity, Thrombosis and Vascular Biology

Resolving inflammation: dual anti-inflammatory and pro-resolution lipid mediators

Biological Roles of Resolvins and Related Substances in the Resolution of Pain

Resolvins in inflammation: emergence of the pro-resolving superfamily of mediators

Also make sure you elevate your bed by at least 20% for at least the first 4 months by elevating the 2 feet at the head of your bed or the mattress… even longer… if you still have head pressure or headaches. It often takes 1 year for cerebral venous blood vessels to correct their compliance and shape and for the cerebral circulation to correct itself completely.

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Good advice and info @Emerald - I missed that about biking! @IJVman if you are cycling already after surgery, I do agree that this is too soon, cycling does put quite a strain on your neck & shoulders, especially if you’re using a road/ racing bike as the forward head posture is not great…

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Thanks

I will ask about Trigeminal nerve or facial nerve things before getting Botox.

As for the nerve medication, I think the gabepentin which I have been taking for 26 days might take the top off, so not keen on stopping that

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Thanks!

I know I had microsurgical decompression of the lower cranial nerves IX, X, and XI. Also pretty sure my facial nerve was in a weird place in one of the sides and had to be moved quite a bit.

I do think it takes the top off, atleast the very first bites, but maybe it was just time. I manage to get (bland) food down twice a day to not starve. I take 3xday, (300, 300, 600mg) 1200mg in total.

Tried that a couple of years ago, but yeah - maybe I should try again. Those meds are just not “easy” switching up from one day to another, and it would make the picture unclear overall about the progress.

okay, that doesn’t sound promising.

It truly is, but thanks for helping and sharing info:)

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That sounds bad, I’m sorry!

When I say gabapentin might take the top off I also mean as in now I don’t fall or desperately stab myself with a knife in the hand in total desperate panic the second I can move when eating. The terrible struggle between starving (and all extra symptoms+unhealthiness that comes with that) and taking the decision to inflict crazy pain on yourself by trying to eat is some mean stuff. My pain from brushing teeth is also a bit better now (usually I do it right after the meal).

But you are/were certain it is FBS, and not also other nerves in generel?

Thanks - I’m still optimistic about this stuff definitely going away. But the aftermath after the devastating meals ruins all social stuff and studies, which makes me a bit less patient than one could hope. Have you also often been knocked out for a long time after the meals by exhaustion and extra symptoms from other stuff, like bad tension headache from your entire neck area that has been under stress during the meal?

I hope you get better soon

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It’s stationary biking, very upright position, low enough heartrate. I’m feeling fine during and after, and believe it helps me sleep better - and one could argue it makes the blood flow better as well?

Normal cycling is no good, aside from the position, also due to constant “impact” / sensations from the road.

The surgeon said wait 1 month before slowly getting back to it.

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Thanks for the thorough answer!

As I answered Jules just now, it is stationary biking, very upright position, low enough heartrate. I’m feeling fine during and after. The surgeon said it was fine after 1 month slowly getting back to it.

I will take you words of caution with me though, and keep it down / do it less / very low intensity, just to be on the safe side.

Yes, this works out - I don’t carry heavy stuff, and I’ve not started doing any strenght training yet (even though I have always worked out)

Good points on the botox (which I might end up not having anyways, depending on what the doctors think as well and how the next month goes).

Luckily I avoid NSAIDS already, eat herrings, and sleep with an elevated bed. Will take aspirin on the most “important” days.

Thanks for the advice and info - and I am trying to be patient about the 1 year thing:)

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I think it was mainly FBS for me, because I’m 10 months post op now and it mostly just hurts when eating for a few bites, sometimes longer if I’m consuming something like balsamic vinegar or lemon/lime etc. Occasionally I’ll still have FBS or nerve related pain from brushing teeth or shower.

I have really bad sleep apnea and ehlers danlos and MCAS so I’m exhausted all the time and it would be difficult to say what was caused by surgical recovery. I was really messed up the first few months and had several emergency room visits and ambulance rides even after 8 months because of some weird extreme issues with my pulse and blood pressure. Things aren’t much better now, but maybe a little.

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Hi IJVman again,

You said that you have used amitriptyline before and had difficulties. If it is due to the antimuscarinic and anticholinergic side effects (drowsiness, dry mouth, blurred-vision issues, orthostatic hypotension, dizziness, constipation, gastric reflux…), then it might be best to consider nortriptyline which has a lesser degree of these side effects.

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Thanks for sharing, that sounds terribly. Sorry you had to go through all of this and still is…

Was it the entire meal that hurt when it was worse? Like, obviously the First Bites have always been the worst, but 10 minutes into the meal, were you still getting pain from every new bite, albeat less than the very first bites?

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Yes, I would have terrible, horrific pain with every bite that would last for the entire duration of any meal and would occur with any snacks and often beverages alone. I could be in FBS pain for 20 or 30 minutes depending how long I was eating for.

When I talked to my surgeon, Dr. Osborne, 8 months after my operation, he said he’d never heard of this happening and that it’s called first bite syndrome because it’s only supposed to be the first bite… but I realize now he’s said a lot of stuff that is questionable and I trust him and his word significantly less than I did before my surgeries with him. He’s still a good surgeon, but ultimately doctors won’t really care about you or your issues, especially once they have your money and you’re already out their door.

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And this went on for months, but my surgeries were especially long and complicated. My FBS became FBS and not EBS (every bite syndrome, as I call it) around 6 to 7 months post op.

I’d guess you’ll see FBS improve somewhere between 3 and 5 months, maybe 6 or 7 maximum… my healing has been especially slow to an unusual degree, I would doubt you’ll take as long as me. I still have FBS and sometimes it’s pretty annoying but it’s generally much more tolerable now.

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Hello IJVman,

I am about 4.5 months post-stylectomy. I developed FBS (First Bite Syndrome) a few weeks after surgery. It was such an intense tasting sensation that it actually hurt. It was worse the longer I went without eating or drinking beforehand, and it was especially intense when eating something sour or sweet, like raspberries. Although it was definitely painful, I Googled the symptoms and came across FBS. When reading about the probable cause, I was comforted by the fact that this sensation is likely caused by an irritation of the nerve supplying the parotid gland. Because of this, it is usually temporary, as the nerve eventually recovers and returns to normal function.

In my case, it did turn out to be temporary. The FBS has been steadily improving and is no longer painful, nor do I experience that overwhelming tasting sensation anymore.

My other symptoms, however, are a different story: I suffer from a similar pain when eating, which I can reproduce simply by opening my mouth very wide. Reading your post, I felt a strong connection because I recognized so much of my own experience in the symptoms you described while eating. After three years of suffering, I am now in a daily routine where I don’t eat until the evening. In the evening, with the help of medication, I manage to shovel in the calories needed to somehow maintain my weight. Eating is no longer a pleasure. So I am not happy with this situation nore the routine I developed.

That said, I have a pretty good understanding of what is going wrong in my throat in my specific case. It is likely an innervation issue with the suprahyoid muscles on one side, which was already present two years prior to surgery. The reason I suffer from these symptoms might therefore be different from other patients, so this probably won’t help you with your specific issues. Nevertheless, I think being two months post-surgery is still a timeframe where your FBS and eating difficulties have a good chance of healing on their own.

I wish you the best!

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eat more often fish- mackerel (hot smoked, stewed or in cans), nuts-walnuts, olive oil, etc. This food nourishes the nerves very well. Try to make fewer sudden movements.