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Eagle Syndrome - Online Support Group

ES and Csf leak

Hi Everyone. I’m new to the group. I live in London, Ontario. I will have my ENT appointment at University hospital this coming Sep 22 because i have this lesions in my throat. Lately, I am having trouble swallowing and pain in my right shoulder, right neck and right ear to my right temple. My throat seems like narrower and seems like my tongue descended. What are your other symptoms for Eagle syndrome? I have post nasal drip since Aprl and I suspect I have Csf leak but not yet diagnosed tho symptoms are present tok

Hi
Can you tell me the name of the ENT doctor you’ll be seeing. Does he know about Eagle Syndrome or should I say believe in it.
Wish you the best,

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Hi!
Trouble swallowing is a classic ES symptom, the pain in your neck too. There are many cranial nerves in the same area of the styloid processes, & if compressed they can cause pain. The accessory nerve for example can cause pain in the shoulder, & the Glossopharyngeal nerve can cause pain in the throat & ear. The Hypoglossal nerve if compressed can cause tongue dysfunction too.
There’s more info in the Newbies Guide:


Worth reading as there may be more that you don’t realise. Also Isaiah40:31 has found some info on Youtube, Two Minute Neuroscience videos which go through the Cranial nerves & their functions, which can be helpful to understand symptoms.
To get diagnosed with ES, a CT is the best way to see the styloid processes, so if you can get your ENT to get this done for you that would help- make sure it’s evaluated for ES so that they specifically look for the length & angle of the styloid processes & also to see if there are any calcifications on your stylo-hyoid ligaments. If you suspect that you may have vascular ES where the blood vessels are compressed, then a CT with contrast is good. ES doesn’t directly cause CSF leaks, but quite a few members have had compressed jugular veins, which can then increase the pressure inside the skull (Intracranial Hypertension), which can sometimes cause a leak.
We have several ongoing discussions about CSF leaks which you might find interesting, there’s info about testing which can be done for CSF leaks, like the nuclear pledglet test, that might be something you could ask for.
Here’s a link to to one of the discussions:

Hope this helps!

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I had constant sinus drainage that I thought was CSF leak. I am not sure what exactly it was/is, but after my Eagles surgery, it has been less. It always also felt like it may have been inflammation from the styloid or stylohyoid or even from a salivary gland. Sometimes, I still feel like I have a salutary gland problem, but not very often. I am reasonably sure it was caused by the Eagles, but you could have both issues. Hope you find out soon.

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Hi

I am awaiting my Ctv results to confirm vascular eagles. I’ve been unwell for 29 months and my nose has intermittently been leaking clear fluid for around 24 mths. They suspect I have a secondary csf leak caused by untreated high pressure

Hi @Ndeyro,

As far as the possible CSF leak testing can include the Pledget study (will capture fluid in the sinus and GI if it is swallowed) as Jules mentioned, specific CT imaging to identify skull base thinning or rent for a cranial leak, glucose testing or Beta-2 transferrin if you have any drainage out of your nose. It can be very difficult to identify as not all testing shows the leak despite a defect. As Natty04 mentioned, skull base CSF leaks can also be a result of intracranial hypertension which may be caused by IJV stenosis from an elongated or thickened styloid (Vascular Eagles Syndrome)…a real relationship does exist there and is just emerging in the last few years.

Do you have positional headaches? This can also point to a CSF leak but is not mandatory to rule it in.

Hope this is helpful information with your coming appointment on the 22nd. Stay safe and be well!

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