All of my symptoms are intermittent. Always the same pattern for 2 years. Almost no symptoms for 3-5 days then the symptoms start coming back gradually and they last for 2-3 days. And…the rollercoaster ride goes on and on. Very frustrating. Is it normal? Does anybody experience the same thing
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@Richard123 Hi, what sort of symptoms are you experiencing intermittently?
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Ear pain (bottom, front and behind). Sometimes a sensation that something is burning inside my ear. Jaw pain specifically under the mandibular bone. Mild pain under the eye right around the cheek boone. I had eustachian tube disfunction a year and a half ago for which i underwent et balloon dilation. However that is ok now. When all these symptoms begin i have difficulties speeking. All of this is on and off for no reason. When looking at something of the one scans i had for my etd i can see clearly that i have es. I think i have the neurological form of it. Probably the glossopharyngial nerve. I underwent a specific scan for es on monday and i am waiting for the results. Its as if no one takes me seriously with this. Not easy in Canada. No one does the surgery. Apparently there is maybe one surgeon in montreal but hé does not do it often so….
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I also have this constant sound of velcro or click when i swallow
In your case how are you managing tour symptoms. Did you have surgery?
@Richard123 - It’s very typical for ES symptoms to be intermittent like you’re experiencing them. Sometimes it’s obvious what causes them to flare up but other times there’s no pin pointable reason. Your symptoms do all sound nerve related. Your difficulty speaking would be related to your vagus nerve being irritated, the pain under your eye/in your cheekbone area could be either trigeminal or facial nerves (could be both). Those plus the glossopharyngeal nerve are very commonly irritated by elongated styloids & generally heal well once the styloids are resected so that’s good news. The velcro sound/click when you swallow could be coming from your hyoid bone. Do you know if the CT scan you had covered the area from your skull base to your hyoid bone? Hopefully the hyoid is visible. If it is, you can ask your doctor if your hyoid bone looks normal or if the greater horns look longer than normal.
It’s good to know you’ve had your CT scan. Please let us know what your radiology report & doctor say once you’ve had your follow-up appointment.
You can try icing your neck several times a day for 20 min at a time using a thin cloth between skin & ice pack to prevent ice burns. Gel ice packs are available which can be either heated or frozen thus if you find ice doesn’t help, you can try using heat on your neck.
Some of our members have found using lidocaine patches (5%) on their necks helped reduce pain, too. Getting an Rx for a nerve pain medication has also helped a number of our members. We suggest trying the non-medication routes first but if they don’t help, a nerve pain medication could.
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Thank u for the info. I am convinced since the beginning that mine is the neurologic form. The scan i took on monday is from the base of the skull to the Upper neck so everything should show. I have nerve pain médication which helps but still…it does not solve everything
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It’s good that the medication is helping, I hope that your scan images show your hyoid too, have you asked to get copies of the images yourself?
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I tried but they would not give it to me because it was done at the hospital! What a studios thing. My general physician gave me a request for the same scan and i qu’il get it done at a private Clinic in 2 weeks (ct 3d plus angio). That way i will get my copies because i dont think i will get the surgery in Canada. I think there is only one in montreal that does it (chum). I dont trust him
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