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Eagle Syndrome - Online Support Group

Carotidynia, anyone?

Hi All,

The ENT I saw locally believes I have something called carotidynia, as well as glossopharyngeal neuralgia. He is advising me to make an appointment with a neurologist at a well-known hospital such as John Hopkins. His view on Eagle’s Syndrome is that it doesn’t exist. He ordered an MRA which showed a small cerebral aneurysm. I was shocked to learn this new information! Apparently, there seems to be a lot going on in my head!

My question is has anyone here also been diagnosed with carotidynia (inflammation of the carotid arteries), and/or an aneurysm? I suffer from constant head pressure and headache.

Thank you!

Hi Cat1,

The carotidynia could be coming from vascular compression by the styloids & will resolve when they no longer press on the carotid arteries. Additionally, ICH (intracranial hypertension) & headaches are somewhat common side effect of vascular compression by the styloids. Jules, our other moderator, had a big problem with that prior to her surgeries.

There is a chance that your cerebral aneurism will shrink or disappear once the pressure is off of the carotids, if they are what’s causing the problem. I find it interesting that your ENT hasn’t looked at your carotids w/ a view to checking for vascular compression by your styloids. I suppose that’s because of his stand on ES. Vascular compression is most easily seen in a CT w/ contrast. It’s important that the CT be done w/ your head in a “provocative position” i.e. the position that brings on the headache or causes the feeling of pressure in your head to increase.

Here is a link to discussions on our forum about carotidynia:
https://www.livingwitheagle.org/search?q=carotidynia

I can’t add much more to what Isaiah has said, but would just suggest that you check before seeing any more doctors whether they treat ES so you don’t waste time. And have a look at our doctors list to see if there are any experienced doctors in your area. A CT with contrast should show if there is compression by the styloids, if you’ve not had one.

Good Morning,

Thank you for your reply. I have suspected that the carotidynia and headaches are coming from vascular compression on my carotids. Interestingly enough, when a neurologist I had been seeing for headaches learned the ENT was ordering an MRA, he asked the same question you did. He wondered why the ENT wasn’t also ordering a CT w/contrast performed with my head turned in a provocative position. Although, I’m very thankful he at least ordered the MRA so now I’m aware of the aneurysm!

I think the ENT might have done me a favor in suggesting I follow up with a neurologist/neurosurgeon regarding the glossopharyngeal neuralgia and carotidynia. Perhaps while looking more closely at the aneurysm, he will also explore the possibility that Eagle’s could be causing the inflamed carotids and glossopharyngeal neuralgia-two birds with one stone?? We will see!

Thank you again for your input. Your’re always so helpful.

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Thank you, Jules. That’s very good advice.

Have a great day!

Thank you, Cat1. I do hope the neurologist/neurosurgeon will be fully diligent to explore all possible causes of the carotid/aneurism problem. The goal should always be to discover & treat the cause & not just the symptoms. Many doctors don’t “get” that & aim just to deal w/ symptoms. Symptom management is a good thing but continued search for the cause is even better.

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Hi Cat1,
Good grief. I always feel I should give the caveat that I cannot provide medical opinion, but not in this case:) ENT is flatly wrong that there is no such thing as ES. Most people who have cerebral aneurysm need to have neurosurgeon involved in their care. I hope you find someone knowledgeable very soon and start to get some helpful answers. This list is an amazing resource.

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