I’m sorry for the loss of your brother, and that you were dismissed years ago! And of course you want to be as healthy as you can be with your little girl to look after! We’ve had several members who’ve started ES symptoms or had symptoms worsen during or after a pregnancy; our theory is that as ligaments loosen due to the hormones, to make it easier to give birth, that maybe this shifts the structures of the neck a little too, & so can alter what the styloids are compressing or irritating, so this could explain why your symptoms have changed…
I agree that you could well have vascular ES; carotid artery compression can cause the fainting spells, and dizziness. But some of your symptoms sound like they could be from internal jugular vein compression too- tinnitus, especially thumping or whooshing in time with your heartbeat (pulsatile tinnitus) can be a symptom of that, as well as dizziness/ off balance feeling, and brain fog.
The vagus nerve is also often affected, which can cause heart arrythmias, (this can be due to irritation carotid sinus too), also increased BP, & digestive symptoms. The vagus nerve is within the carotid sheath along with the carotid artery and the IJV so it’s possible all are affected.
Pain in your neck, throat, ear ache, swallowing pain or difficulty, pain turning head etc are the more ‘classic’ ES symptoms & are often nerve related as you’ve said. There’s more detailed info in this section about symptoms & possible causes if you’ve not seen it:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Symptoms can definitely change with time, your last CT was a while ago, so the styloids could have grown since then as well. If you’re able to get a new CT, preferably with contrast, that would be helpful? Sometimes these can be done with your head in different positions, so if you could get one done in any position which makes your symptoms worse that would be great, but not to worry if not. You would ideally need the contrast to be timed to capture arteries and veins as you could have both affected.
Given that it does sound like it’s vascular ES, it might be an idea to see a doctor experienced with that if you don’t want to wait for Dr Chan-Leveno, although it might mean travelling, and some of the best VES doctors have long waits too, but it’s worth it to make sure you get the surgery done properly… So the VES doctors that we know most about are Dr Nakaji in AZ, Dr Hepworth in CO, Dr Costantino in NY and Dr Cognetti in PA. Also Dr. Babu Welch at UT Southwestern, 5303 Harry Hines Blvd 7th floor, Dallas, has performed surgery for VES but only for one member that we know of. Dr Osborne in CA has done lots of successful surgeries too, not necessarily for VES but those with VES who have had surgery have had good outcomes- he doesn’t take insurance so cost can be an issue, but he does have a short waiting list as he does these surgeries all the time, whereas some of the other doctors do cancer surgeries as well…
Here’s a link to the doctors list:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope this is helpful and that you can get somewhere with other doctors if that’s what you decide!
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