@Kimberk615 - I totally understand your confusion regarding Dr. Hackman & the whole process his office put you through. Why set you up for surgery then have the doctor say no?! You also bring up a good point re: Vanderbilt. I’d be curious to know how much influence the Vanderbilt notes had on his decision to turn you away. If you included the notes from your spine doctor, it doesn’t seem reasonable for Dr. Hackman to blame your symptoms on posture.
Your case does sound a bit confusing as we’ve never had someone w/ just a ligament attaching styloid to skull base, but I agree with you, that would allow the styloid to be more mobile & cause more trouble whether it was normal length or even slightly elongated.
I think trying to get a consult w/ Dr. Cognetti as he charges less for cash paying patients and sees patients with either non-vascular or vascular ES so he would be a good choice for you. He’s one of the most experienced ES surgeons on our Doctors List. I hope that he would at least allow you to have a consult with him so you could discuss your situation. Dr. Costantino only deals w/ vascular ES where the IJV is compressed. It would be worth checking with both offices regarding your insurance as one or both may take what you have so cost for surgery would be less of an issue.
You will need a CT w/ contrast which will show your internal carotid arteries & internal jugular veins. A dynamic CT scan w/ contrast (head turned in several directions i.e. up/down, turned L/R, or at least in the direction you feel worsens your symptoms) will be the most helpful for either of those doctors. If you’ve already had one, that will be what both doctors will want to see.
Here’s a link to a discussion that has a lot of information & some exercises for restoring the lordotic curve in your neck. It isn’t necessarily a painful process but can take some months. Working on that could help reduce your symptoms as you seek the right doctor to help you.
Even if the path gets difficult to navigate, never give up on this journey toward getting help with your situation. There will be a doctor who is willing to remove that calcification in your neck. We are here for you all along the way. 