I’m about stumped for answers at this point so any input/opinions would be appreciated, my imagination is open. I had a Venogram was “negative” with right head rotation. Symptom wise I have about everything in the book (stroke/TIA-like symptoms, face pain and swelling, objective pulsatile tinnitus, myelopathy, cognitive symptoms, feel arterial pulse in teeth on left side, swelling in throat, stridor with exercise, photophobia, personality change, constant nausea, you name it).
I see an MS specialist next week (don’t think I have it but at least an academic neurologist can decide where to send me).
3D reconstruction shows internal jugular veins both compressed by C1 (~1yr ago)
Left - Feel face and neck pulling when rotating head to right
Neck CT with contrast more recent
Size of IVJs superior to C1
Size of IJVs (pink) at level of C1 with calcified stylohyoid ligaments (cyan)
Dilated collateral veins of pterygoid venous plexus (green above) (left side of throat feels and looks like it’s caving in, and tongue swelling on that side also)
Veins all contributing to the jugular vein below level of C1 giving appearance the vein is “large” as one ENT put it. I suspect the catheter for the venogram was not high enough and reads as normal but most of the blood is coming from elsewhere and not the jugular vein. Both sides have similar appearance on this more recent CT than the 3D from a year ago.
Left side collateral vessels on angiogram which I firmly believe to be causing face and eye symptoms
This all started with face pain ~7 years ago, and a large emissary vein draining from the back of the skull on the left side was sacrificed for a craniotomy (right before, left after). An already compromised venous system now missing one of its routes. A lot of my Eagle symptoms started right after the craniotomy. Diagnosis was unknown but couldn’t handle the facial pain any longer and there was a visibly large vein compressing it so I took my chances. Helped for a while but slowly gotten worse over time.
Unfortunately I think I also may have Bowhunter syndrome on the Right side (osteophyte compressing R vertebral artery) after reviewing my CT (only explains a few of my symptoms and not left face issues) but will have to get in line for another angiogram or maybe Doppler ultrasound
I’ve probably seen 10+ specialists between ENT/neurologists/neurosurgeons who usually want to send me to a headache clinic (also didn’t help).