Hello everyone! I am new here and hoping someone might have some insight. My story is kind of complicated but I will try to summarize as quickly as possible.
In July 2014, at age 22, I had an upper cervical fusion with screws in my occiput, C1 and C2. Following that surgery, I became drastically worse with mind-blowing neck pain, dysautonomia symptoms, and dizziness/fainting with head turning.
In November 2014, I presented to the ER with severe neck pain. I had a CT scan done to look at my fusion status and screw placement and it was noted that my c2 screw was abutting my vertebral artery. I was put back in my brace for fear that I would have a stroke.
I went through months of physical therapy, pain management, bracing, etc. without improvement of my symptoms and in fact, was pulled out of PT again for head turning symptoms. I had an angiogram with head turning to look specifically at my vertebral artery and everything was okay.
Then, in May 2015, I had a second neurosurgery with access through my lumbar spine. Things still did not improve.
October 2015, I saw a vascular surgeon who found that I had significant bilateral compression of both internal jugular veins. He thought this explained both my dysautonomia - poor draining leading to higher pressure in the brain - and my head turning symptoms. BUT, he had no idea what was compressing them.
Sometime after, I learned of a sort of "psueo eagles syndrome" happening in patients with upper cervical fusions due to limited "real estate" in the neck. I am having my imaging sent to Dr. Cognetti in Philadelphia and Dr. Nakaji at Barrows.
Today, I pulled up my CT angiogram from Nov 14. I'm wondering if anyone could verify what I am seeing? Based on my knowledge and viewing my compressed jugulars on 3D CT, I think that this image is showing my internal jugular -- in light white -- between my styloid bone and the front of my c1. (attached 2nd image for reference, believe that is showing my carotid arteries)
Has anyone been in a similar situation? Vascular eagles with a normal length styloid?
Overall symptoms: excrutiating upper neck pain, jaw pain, face pain, difficulty swallowing (extensive swallow therapy), issues with voice (confirmed paretic vocal cord), dizziness with head turning, heart rate/blood pressure issues28-styloid.PNG (65.6 KB) 29-carotids.PNG (68.6 KB) 30-styloidsfront.PNG (268 KB)