Hi & welcome!
Oh goodness, you have so much going on and must be feeling grim, I’m sorry that it’s been such a battle for you to get diagnosed! Well done though for remembering ES and pursuing this, it’s good to hear that it is taught to medical professionals (although not enough for our liking!).
Given your CT report it certainly sounds as if you would be wise to get at least a couple of consultations from the VES doctors… Dr Lui sounds like he has the shortest waiting time of those so would be a good bet if your insurance will cover him.
I would presume that @Isaiah_40_31 has probably given you the info already, but it sounds like your vagus nerve could well be being irritated and causing symptoms, and perhaps also your spinal accessory nerve (the arm and shoulder pain). There’s info here if you’ve not seen it:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And some good info about the vagus nerve symptoms here:
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
Iy sounds like you’ve tried alot of the treatments/ tips we usually suggest for the pain, but there might be a few more suggestions in here, especially for the IJV compression:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
It might be worth holding off on the CTA and CTV for now , and seeing if the imaging which gets sent for your referrals is enough? Some doctors have specific protocols which they like followed if it isn’t good enough, but now it’s been re-read it sounds as if the vascular compression showed up fine on what you’ve already had done. Regarding the MRA of your shoulder, the contrast medium commonly used for that is Gadolinium, which some people do react to. I don’t know with MCAS whether you might be more susceptible to this, it’s worth looking into & considering though? We’ve had some discussions about Gadolinium toxicity, apparently there is a new technique which can avoid this but not sure if it’s very widely available:
MRI contrast risks / Gadolinium toxicity - General - Living with Eagle
I hope you don’t have to wait too long for treatment…
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