Bilateral styloidectomy with Dr. Hackman 1/8/24

@Isaiah_40_31 I think I’m going to have the cavity taken care of but postpone the cleaning for sure. At least until after I see another specialist in April. I’m scheduled to see an orofacial pain specialist in Florida that I’ve been wanting to see for over 3 years but had to cancel for various reasons. She’s very knowledgeable in facial pain disorders and rules in or out 9 different causes of facial pain, starting her diagnostic process with an MRI of the jaw joints. There’s a common misconception that “TMJ” which is incorrect term in itself is only “clicking, popping, jaw pain etc”, but it’s much more than that. Damage inside the joint can present with absolutely no sounds, no jaw pain, no limited opening, no deviation. Instead it can present with only migraines, or only facial pain, neuralgia etc. A lot of symptoms in cranio cervical disorders overlap that’s why it’s so hard to diagnose and that’s why for example so many patients with ES get no relief from surgery or only get some relief, because there’s something else going on or their actual diagnosis is entirely different. Sorry for the long rambling lol, I’m hoping it might help someone who reads it searching for a comprehensive diagnostic approach.

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This is a good observation, @Elena. There are definitely other causes beyond ES for symptoms we frequently define as ES-based. I’m really glad you have a medical resource you trust to help you evaluate the potential cause(s) of any ongoing pain you have once you’re more fully recovered from your ES surgery. I think 6 mos post op is a good time to evaluate what has gone & what is sticking with you, but if you’re really miserable at 4 mos, then it’s worthwhile to pursue evaluation.

BTW - Your post wasn’t long/rambling, & I really appreciate you mentioning the doctor you’re aware of in FL. Thank you for that. I hope she can really help you if you don’t get great results from your styloidectomies.

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@Isaiah_40_31 Thank you for being so open minded about all possible causes of our pain issues. I agree that 6 months is a good timeframe to evaluate the benefits of the surgery. At my appointment I’ll be a little over 3 months out of surgery and while it’s probably not enough I’ll still pursue that appointment since I won’t be getting any treatments but only an assessment of the joint health and possibly a diagnostic injection (not :100:). It’ll be interesting to see if styloidectomy had any effect on the jaw joints due to the area my incisions (as you know Dr. Hackman cuts in front of ears), my left side feels weird but it’s highly possible due to the lingering numbness/swelling from the surgery. I had a jaw joint MRI 3 years ago and it’ll be interesting to compare it with a new one that I’ll have done next month. I will post an update here if I find out anything noteworthy at that appointment.

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I would definitely postpone the cleaning for now, and possibly the cavity too depending on how big it is, so sorry that your pain has flared up again :hugs:
Let us know how you get on with the doctor in Florida, I’m sure lots of members will be interested to hear how you’ve got on & the testing she does.

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I have searched for the topic of the first bite syndrome on the forum and read testimonies but curious to hear if it’s possible to develop it 2 months after the surgery? I started having it last night while I was already eating and holy guacamole it’s intense, like a sharp shooting through the angle of the jaw down my neck and even into my face. All on the left side. It happened today too at dinner but not at breakfast and not necessarily with the first bite. It also happened when I was driving and took a sip of energy drink. I’m wondering if it’s maybe something else and not FBS. I always thought I had some form of FBS well before surgery for many years as I would get cramping sensations when buying into something hard like apples but it was nothing like this. Yikes. :flushed:

It’s possible at least in some cases, including mine. I developed FBS first about five days after the surgery, and it gradually subsided over the course of about three months. Then, about six months later, I had a week or two of it again. And it went away again. Now and then (maybe once a month) I get it again, but it is very mild (mostly triggered by sweet and sauer candies) and lasts just a day or two, or just happens one time and doesn’t repeat until the next time a month or so later.

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@vdm Thank you for sharing your experience. Did you ever notice any connection to the level of muscle tightness? Lately I’ve been doing a bit too much involving my neck straining, and I thought maybe I overdid it as I’ve developed pain at the base of my neck going down and into the trapezius as well as occipital area and now this sharp pain under the corner jaw line, all on the left side. Or is FBS always solely a reaction to the process of eating/and trigger flavors? It felt like a labor contraction in the face for the lack of better description :joy:

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In my case that is solely related to the sudden production of saliva. In the first weeks, it was between mild “tingling” and sensation like a few fire ants biting the cheek at the same time. The key was to simply brace myself and mentally be ready for that, knowing that it would last maybe ten seconds or so and that’s it.

These days when I get it, it’s just a weird mild sensation, comparable to accidentally biting into a jalapeno pepper without anticipation, only that it wouldn’t last longer than five seconds or so.

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Like @vdm, my FBS started about 5 days after my first ES surgery (R side). I didn’t get it at all on the L side after my second surgery. Mine has never gone away completely, but I feel your pain as you describe how bad it is. When mine first started, it would nearly bring me to my knees. It would cause an adrenaline rush, rapid heart beat & sometimes even slight light-headedness. My pain was all in my face from the corner of my jaw into my cheek/jaw areas & sometimes into my right ear. I would grab my face & do a little dance around the kitchen or wherever it hit, & that made my family laugh. At least someone got pleasure from my pain. :laughing: The intensity gradually decreased over the course of a year but it has never fully gone away. Happily, it rarely strikes me anymore, thankfully.

The best solution I’ve found for helping FBS be less painful is to stay VERY hydrated i.e. drink 60-100 oz of non-sugary, non-caffeinate fluids during the day. That keeps the saliva more dilute which in turn, for me anyway, also reduced the intensity of my FBS pain. Another thing that sort of helped was to put a piece/bite of food in my mouth & let it sit for 10+ seconds before starting to chew. That might help the big saliva dump to start more slowly when you first start eating.

FBS is caused by the glossopharyngeal nerve over-stimulating the parotid gland. I never researched it much because I was too busy trying to figure out how to avoid feeling it. :rofl:

Regarding why you might have gotten FBS this far into recovery, I speculate that it may be part of your glossopharygeal nerve’s healing process, & at the moment, it’s angry during recovery. Hopefully this new challenge will be very short lived. If it becomes unbearable, a nerve pain medication can help reduce symptoms. I hate always suggesting medication, but it does serve a purpose, even if it’s only a band-aid to make life more tolerable for awhile.

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@Isaiah_40_31 thank you for sharing your experience, it sure doesn’t sound fun at all, well except maybe for your family watching you dance :joy:

Thank you for all the recommendations, I usually only drink water all day every day and sometimes black tea with manuka honey in the mornings but today I saw that Celsius energy drink at the store and succumbed to temptation :crazy_face:, strangely I had that “attack” in the car while taking a sip of it and it wasn’t a first sip either when the pain hit. That’s why I’m confused, I don’t necessarily connect those attacks with saliva production as I had another attack when I wasn’t eating anything but simply got out of the car to go get an Amazon package and turned me head a certain way - wowza!

But the way you described it matches mine to a T - an intense shooting from the corner of the jaw into my cheek, down the parotid gland and even down the neck. I generally disregard different weird neurological symptoms that pop up here and there during the day as I trained my brain to keep calm but holy cow, this attack made me anxious and indeed caused an adrenaline rush that took awhile to subside.

I’ve been nervous to eat the rest of the day but out of curiosity or maybe stupidity :joy: I decided to experiment and just ate a hot dog and nothing happened. So maybe it’s something else. I’ll monitor it over the coming days and see if it happens again :crossed_fingers:

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Certain foods were a guarantee of fireworks in my parotid - sour/tart, very sweet/salty, & spicy foods, but the sour/tart (fresh pineapple is a favorite of mine & I had to give it up for awhile) was definitely the worst. However, when my FBS was at it’s worst, just thinking about food would elicit a response. I recall trying a sort of bland diet for awhile, but even that would sometimes end up w/ “the dance”. :sweat_smile:

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I still get it occasionally, luckily not as intense as yours & @Isaiah_40_31 's sounds, and it’s not always the first bite , sometimes part way through eating.
I hope @Isaiah_40_31 's point about the GP nerve healing is right & that could explain why you’re getting it now- nerves can do weird things while they heal, I get a strange whoosh/ tingle up the outside of my ears since surgery, it’s not as common as it was but I still get that if something makes me jump!

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