I agree with @Emerald 's comments & thanks for labelling the CT images!
It’s really frustrating as Prof Elliott does seem to be the most experienced doctor with vascular ES that we know of in Oz, and has declined to treat you- it looks as if there’s a fair amount of compression being caused by the C1 processes as well as styloids, so just removing the styloids might not be enough to help you. (But if that ends up being your only option it may well be worth a try to relieve your nerve pain and swallowing symptoms) It also sounds as if you do have high intracranial pressure, and that the symptoms are becoming worse from that- the leaking fluid from your eye sounds quite worrying, as this could be a CSF leak (rare to have this from your eye, but can happen- leaking from nose or ears is more common). Muffled hearing, headaches, dizziness, pulsatile tinnitus, visual symptoms, brain fog, etc are all vascular ES symptoms.
We are seeing members with more than one vascular compression syndrome, so TOS sounds like a possibility- proper testing would be needed to evaluate that…numbness, pain and/ or weakness in arms can be caused by a compressed spinal accessory nerve, and that is one of the nerves commonly affected by ES, but can’t say for sure which is the cause…
You could ask for a nerve pain medication to see if that settles the jaw, teeth & scalp pain, all common when the trigeminal or facial nerves are affected…
An OMFS might be able to diagnose ES for you, but you would really need a surgeon experienced with VES for the surgery, & doesn’t sound as if Dr Dixon would not be ideal as @Emerald said, if he only does intra-oral surgery…
It’s frustrating that a Neuro didn’t recognise the intracranial hypertension symptoms you have, we’re not very good at looking at MRIs on here I’m afraid…
I’m not really sure of what to suggest other than wait to see Dr Dixon or the OMFS doctor, whichever comes up first & try & get them to refer you for a CT with contrast, if you can’t afford to pay for one yourself? And even then it sounds like it’s going to be tough to get treatment, as if Prof Elliott won’t help I don’t know who else would treat this in your country…Others have resorted to getting an online appointment with Dr Aghayev in Turkey as he will review imaging, but not sure if he would still review without contrast images, and again there’s a cost (he does have a look for free & I think the cost to discuss your case with him is much lower than other doctors charge).
In the mean time, if you don’t already try sleeping propped up as this can help. I don’t know if your GP would be willing to prescribe a blood thinning medication like Diamox, Plavix, or you could ask about aspirin, or try supplements otherwise, there’s info here:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There might be an Australian support group for intracranial hypertension you look at, they might have suggestions of doctors who treat this, and you might be able to get to see someone knowledgeable about IH who would actually look at your images & possible causes? If you’re on FB maybe have a look here:
IIH - Intracranial Hypertension Australia - Support Group | Facebook
Thinking of you, it’s such a difficult position to be in, and unfortunately we do understand on here, I wish that health care was better!
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