@Jem -
A consult w/ Dr. Osborne will be a positive step toward getting a diagnosis. He will be helpful for you.
These are symptoms caused by the styloid causing irritation to several cranial nerves.
Do you know if the ENT to whom you’ve been referred is on our Doctors List? Here’s a link to a post about surgery. In the middle of the post there’s a list of questions we recommend you ask any doctor with whom you have an ES consult:
Next step is getting a CT scan w/ contrast of the area between skull base & hyoid bone or collar bones. Get 2 copies of your imaging on CDs before you leave from your appointment.
After that choose a couple of doctors with whom you’d like to have an initial consult & send them your imaging (check w/ their offices to see what format they want it in before sending anything).
You can also upload it on your computer & convert it to 3D using radiantviewer.com (for PCs) or Bee Dicom Viewer App (for Macs). 3D conversion will help you better see what’s going on in your neck & you can upload a few images here & we can comment on them as well.
In the meantime, you can try icing your neck for 15 min several times/day using a thin cloth between skin & icepack to prevent ice burns. If you buy gel packs that can be both frozen & heated, you can also try heat to see if that helps more than ice. OTC lidocaine patches (5% lidocaine) have been helpful for some members when applied to their necks. Rx strength lidocaine patches (10% lidocaine) are also available. Nerve pain meds such as Gabapentin, Amitriptyline & Carbamazepine have been helpful for some members in reducing the symptoms caused by nerve pain.
If you’ve noticed that symptoms flare when your head is in particular positions, try to avoid those positions.
I hope you’re able to get referred for a CT scan soon so you can be on your way to finding out whether or not you have ES. 