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Eagle Syndrome - Online Support Group

Es symptoms

Since June 6 2019, I’ve had a number of symptoms. Been to about 60 consultations and to about 20 specialists. I went to a head a neck surgean ent and he said I have eagle syndrome. My CT scan shows about 4 cm left and 3 cm right.
My symptoms are:
Ringing in ear, facial tingling and burning pain, eye pain, ear pain, fatigue, off balance…
I don’t feel any problem with my heart but I do feel tingling in hands and feet(feels like circulation) , but all tests come back - Normal-.
I haven’t worked since, have been intensely depressed.

The ent said he would do bilateral styloid surgery but of course doesn’t guarantee 100% relief. I just need to be sure if this will work because I don’t want to make a mistake and be worse off.

Wondering if anyone else had had off balance problems, tingling in extremeties?
Also can I have eagle without any heart problems.

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There’s quite detailed info in the Newbies Guide Section ‘ES Info- Symptoms’,& it explains all the different nerves which can be irritated by styloid processes, & the symptoms that can cause. Heart arrhythmia can be caused by irritation of the vagus nerve, but depending on the length & angle of the styloid it’s not always involved, so it is possible to have ES without any heart problems. It could be a vascular symptom too if one of the carotid artery sinuses is irritated, but not everyone has vascular ES. Ear pain & facial pain/ tingling can be caused by irritated nerves- nerve pain medications can help with this, & hopefully surgery will improve this. Off balance feeling could be one of the nerves to the ear being irritated, or otherwise it could be a vascular symptom- did you have a CT with contrast to see if any blood vessels are affected? Eye pain can be again from the Trigeminal Nerve, but can also be a vascular symptom.
The tingling in your hands may or may not be ES- the accessory nerve can be affected which can cause pain in the shoulder & arms, & weakness, but this is less common.
No doctors give 100% guarantees about the surgery, that would be irresponsible as sometimes nerves can have been badly damaged & may not totally recover, & sometimes it’s very difficult to remove all the styloid if nerves are very close. There are risks from surgery, but equally this won’t go away, it’s the only ‘cure’, & if left in the styloids can keep doing damage. But you can improve the risks by seeing an experienced surgeon, making sure as much of the styloid is removed as possible, & also the tip smoothed off.
Has your doctor got much experience? We have a list in the Doctors Info section- if you can travel, Dr Cognetti in PA is very experienced, or Dr Mark deLacure NYU has done several surgeries recently.
I hope this helps!

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Thank very much for all the info you provided. I did get a ct scan on the neck without contrast i believe. The docotor is Dr Paskhover at rutgers, he seems to be very knowledgable on the subject and stated to perform a few of these surgeries a year.

Do you know what makes the styloid grow? I havent been able to figure out, How Did this all begin for me

The styloids grow possibly as a result of inflammation after a tonsillectomy, or after neck trauma. It can also be caused by metabolic disorders. It could just be that some people have elongated styloids (like you might have big feet for example), but they don’t always cause symptoms, until maybe ageing alters the structure of your neck for example, or even laughing or sneezing hard can set off symptoms.

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