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Eagle Syndrome - Online Support Group

Anyone here with ES and CSF leak?

Hi everyone,
I have been diagnosed with vascular ES (awaiting a surgical date) as well as have a history of CSF (cerebrospinal fluid) leaks. There is a current hypothesis relating vascular ES and insidious/general intracranial hypertension (IIH) due to stenosis of the internal jugular vein from the styloid process, thus reducing venous drainage from the brain. I have seen a couple people mention it on this platform so far and was wondering if anyone else happens to have both, or who have only had the ES surgery and did not have any improvement? It seems like ES is way more prevalent than only 4%-10% of the population and being recognized more and more. Just curious, thanks to everyone sharing their stories. The support here is truly priceless!

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JustBreathe,

There are several people on here who currently have ES & a CSF leak. If you want their screen names, I can pass those I remember along to you.

Thanks, no rush. This is such a good global platform and my clinical brain is wondering if there may be more of a connection between the two. Just thought I would throw it out there. Have a lovely summer day :blush: BTW just received my surgical date - August 19th yipeeeeee, so grateful to have it on the calendar! :pray::sparkles:

Great to have a date! Hope that the time passes quickly for you…will make a note of it!

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Still on for August 19th? Can’t remember - where are you having your surgery?

Hello @sjlash,
Thanks for thinking of me. Yes, I am still on for the 19th in Denver :joy:
How are you? Forgive me but I can’t recall if you have had ES surgery?

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No worries! I just had my second surgery 7/15. My first was 1/7.

Here is the link, in case anything in it helpful to you:

Wow, you have been through so much. Thank you for sharing your story and still supporting so many on this platform, a true blessing! I wish you complete healing and great expectations for what is yet to come in your fabulous life! Have a lovely day :watermelon::strawberry::cherries:

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