Hi dharmadel,
I agree w/ Jules assessment & will add your styloids look very thick to me. Thickness adds another potential to the symptoms dimension in addition to length.
Most of the symptoms caused by ES come from irritation of one or more cranial nerves. Six of our 12 cranial nerves are often affected by ES though not all 6 in each person. In your case, your accessory nerve is likely irritated which is why your bralette is uncomfy. That nerve affects your shoulders, upper back & arms. The vegus nerve is almost always irritated by ES, & its irritation causes many symptoms ranging from skull to throat/vocal cords to heart to gastrointestinal system. The trigeminal & facial nerves are often irritated. The trigeminal nerve alone can cause eye, jaw, teeth, cheek & other facial pain. The facial nerve affects facial expression. Glossopharyngeal & hypoglossal nerves affect tongue, mouth & throat & can create pain & dysfunction there when irritated.
I’m not a doctor, but it sounds to me like you have quite a few irritated cranial nerves. They exist in the neck in the area of the styloids & thus when the styloids are misshapen or too long &/or the stylohyoid ligaments are calcified, they wreak havoc on the nerves which they contact.
We’ve had several recent members experience neck, jaw & lymph gland swelling as a result of nerves irritated by ES so what you’re experiencing is not a common symptom but not unheard of.
I think you’re making the right decision to put off your surgery. When you see your neurologist, don’t give her the long list of symptoms you have. Talk to her about a few of the worst ones & request a new CT scan. Look up the cranial nerves I’ve mentioned & even pictures of where they run in your body. I think you’ll feel very educated & can even tell your neurologist you’re pretty sure of the cause of many of your symptoms - cranial nerve irritation. Neurologists should know what these nerves affect in our bodies, but all too often, even they don’t seem well informed in this arena.
Here is the link to the US ES Doctors List - US Doctors Familiar With ES, 2019
Find someone on there & make an appointment. If you don’t get satisfaction from that doctor, you can make a phone conference call appt w/ one of the very experienced ES doctors on our forum - Dr. Samji (CA) or Dr. Cognetti (PA). Mayo clinics have rarely been helpful w/ ES patients (except in Phoenix, AZ).
I hope this helps!