Hi Jules so it’s been over a month now since surgery and I seem to be in pain daily. The pain really flares when I eat something cold, chew, and talk. I’m assuming it’s the glossopharyngeal nerve. The nerve feels like it’s being pulled. It also hurts it when I move my tongue. I am just wondering if this is permanent nerve damage. Google says that glossopharyngeal neuralgia does not go away and that it’s a chronic condition. Ugh.
Trigeminal neuralgia can be triggered by talking, chewing etc so it may be that nerve otherwise, it has branches to the teeth & along the jaw… It is still early for nerves to heal, it’s worrying I know but they can take months to heal, so this hopefully isn’t permanent. Have you tried nerve pain medications before surgery? It might be worth looking into these, maybe you need something new for now? Praying that this improves 
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Dr. Hackman gave me flexeril which somewhat helps. He’s so busy and it’s hard to get in touch with him. I’ll see what other meds I can take.
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@jentroutty100 - It sounds to me like you may be experiencing First Bite Syndrome (FBS). It’s not uncommon after surgeries in the area of the neck where the styloids are. Both Jules & I had it.
This is the AI explanation, but it’s quite accurate: First bite syndrome is a painful, cramping sensation in the cheek or jaw that occurs with the first bite of each meal and diminishes with subsequent bites.
What that doesn’t tell you is that it’s caused by the glossopharyngeal nerve (GPN) hyper-innervating the parotid gland in your cheek(s) (the largest of our salivary glands). It makes sense to me that’s what you may be experiencing as the GPN also innervates the back 1/3 of the tongue so the fact you’re getting facial pain & tongue cramping when you eat/chew that it could be the GPN causing it.
If it’s FBS, I found that staying very hydrated helped reduce the pain it caused as that kept my saliva more dilute. Other things you can do are, for a while, avoid the foods/drinks that cause it to be the worst, & if it’s too miserable, try a nerve pain medication.
That said, the explanation @Jules gave is also tenable. Bottom line - regardless of whether it’s the GPN or TN or both causing your pain, it’s likely to fade as time passes but may take 3-6 months or more.
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Flexeril is a muscle relaxant, so may not help…a nerve pain medication like Amitriptyline, Carbamazepine or Gabapentin might help?
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I’m happy to hear that it will most likely fade. Google tells me that it won’t go away and it gets worse. I do see it getting worse and more frequent which has me worried. I’m not doing much to make it flare but it still flares. I will just give it time. The pain is deep in my throat, deep in my neck, and the pain radiates down the front of my neck and under my chin. It’s becoming unbearable. It’s a pulling sensation. I can’t even drink anything hot or cold. I’m taking Tylenol and Flexeril. The meds such as gabapentin and all those give me severe side effects so it’s hard to take those. I just want this to go away. I don’t want to be left with severe permanent nerve damage.
Depending on which nerve pain meds you’ve tried, it might be worth trying a different one, they do affect everyone differently, & one can help where others don’t?
Usually the first bite is a sudden pain in your cheek area, so not sure if that quite matches where you’re getting the pain… I wonder if any physiotherapy might help?
In retrospect, I also agree w/ @Jules that your symptoms don’t sound exactly like FBS except they seem to start up as you begin eating/drinking, but those activities can also excite an irritated nerve on their own merits.
I highly recommend continuing to stay in touch w/ Dr. Hackman especially if your symptoms continue to worsen to see if he’ll do a follow-up scan to look for the cause. It might require a FIESTA or CISS MRI to specifically look at your GPN but it would be worth it if it provides an answer.
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Hi there, the pain you’re describing sounds a lot like irritation of the glossopharyngeal/frenal nerve. I experience this daily after a head injury. I also have Eagle syndrome, but the pain you’re describing feels different from typical Eagle syndrome symptoms. Sometimes it can be triggered by swelling in the area, but in my case, myofacial massage has been the most effective for releasing the tight muscles around the nerve.
I’ve also found that following an anti-inflammatory diet, taking a B1/B6/B12 combination tincture, a glossopharyngeal nerve block could help
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