Hi, nice to ‘meet’ you!
In the Newbies Guide Section there’s an explanation about ES symptoms & what might cause them, if you’ve not already seen it, here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
As you’ll see, they could be ES related- for example the Vagus nerve can be irritated by the styloid processes, which can cause heart arrhythmias, & anxiety among other symptoms. I think you’ll see that others have experienced all or some of these!
I would be wary of having any chiropractor do techniques unless they’re knowledgeable about ES, although you say it helps, it could potentially do more damage. (Although I’m UK, & I think that chiropractors are more qualified in the US than here, but might be an idea to check they know about ES) One of our members is a PT & wrote a paper with info other PTs, here’s a link:
Doctor info and research article - General / Research Papers - Living with Eagle
We have had members with elongated styloid processes & also C1 elongated processes, C1 mis-alignment, it might be an idea when you find a doctor with experience to check about the C1 process as well. Also, was there any mention in your CT report about whether the stylo-hyoid ligaments are calcified? This can often happen too, & can also cause symptoms.
Unfortunately there is no ‘cure’ for ES other than surgery. There are medications which can help with nerve pain for example, or muscle relaxants to help with extra tension from irritation & pain. Steroid injections/ lidocaine injections into the tonsillar region can help, but these are only temporary & it’s not something you can repeat too often.
But surgery, if done by an experienced surgeon, is less risky & generally successful. It’s a personal decision whether to have surgery- we all have to balance how badly the symptoms are affecting our quality of life, versus the risks of surgery. It sounds like yours have been pretty bad, if you’ve not been able to work or do much exercise, so personally I would think it’s worth looking into. Dr Samji in CA is one of the most experienced US surgeons that we know of, so I’d suggest getting a consultation with him (He does do phone consults if it’s a way for you to go). See what he says & take it from there! There’s info about contact details, & what he needs re scans etc in one of the discussions:
You can contact Dr. Samji’s office by emailing his medical assistant Yerelin - yerelin@caminotent.com
“So the only 100% needed item is a CT neck NON-contrast styloid protocol which specifically measures the length of the left and right styloid bone. This is the only way to guarantee a diagnosis of “eagles syndrome” in our office. Once that scan is received with the report that states the measurements of the styloids then we book a new patient visit to discuss options.”
Also Dr Chettri in UCLA has done surgery:
Great Dr in los angeles UCLA just had ES surgery - Symptoms and Treatments / Doctor Information - Living with Eagle
Dr Milligan in Arizona also is very experienced.
Here’s a link to the Doctors List:
US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
Hope this helps & best wishes!
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