Given that you have had a clear MRI for your TMJ I would think that you could rule out TMJD being the cause of your symptoms. If you do have a CSF leak then that could cause your headaches potentially, but wouldn’t explain the facial pain, tingly skin, hearing loss etc which can all be due to ES.
If you read the info about ES symptoms in the Newbies Guide section, you’ll see that your symptoms could be explained by ES; it sounds as if you have either Trigeminal neuralgia or Facial nerve pain, as well as this possibly causing the tingling - there are some informational videos on YouTube which explain these, or you can look up images of where these nerves are & see how that corresponds with your pain, both these nerves are commonly affected by ES.
The vagus nerve is also often irritated by the styloids, & this can cause anxiety & the flight/ fight feelings, if irritated it can cause heart arrhythmias and possibly blood pressure spikes.
The vestibulocochlear nerve if affected can also cause dizziness, and that can be a vascular ES symptom as well, although it sounds as if that’s been ruled out, unless it’s positional.
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
2-Minute Neuroscience: Trigeminal Nerve (Cranial Nerve V) (youtube.com)
ES symptoms worsening with posture is very common too- the head forward position looking at a computer particularly can alter the angle of the styloids enough to worsen the nerves they’re in contact with. It’s definitely worth looking into changing your work station & possibly exercises to correct posture, and isn’t necessarily indicative of CCI. @vdm posted info about it in this discussion :
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
Not being able to open your mouth wide could be ES, & pain in the occipital area could be base of skull pain from the styloids, or tight muscles from the pain etc causing the occipital nerve to be painful.
Other members have had sinus issues, muscle jerks have been noted, pain in the shoulders can be accessory nerve related or posture muscle tension…
Some of us also have had issues with the salivary glands, pain, stones, swelling etc Not sure if it is related, I think the Trigeminal nerve may be involved (not sure), & the parotid gland can be affected by the hypoglossal nerve, again I think.
Re the Ernest syndrome, we have had a few members with this, it does cause similar symptoms to ES. Whether that would show on a CT I’m not sure, it could be that the jaw would obscure any calcification there?
There are other doctors on the list who could help you with surgery, from what we gather Dr Osborne doesn’t take some insurances, I don’t know what area you live in but it might be worth getting a second opinion?
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
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