CT Angiogram + 3D Images - Potential Vascular Eagles

General
1

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 issues

28-styloid.PNG (65.6 KB) 29-carotids.PNG (68.6 KB) 30-styloidsfront.PNG (268 KB)
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Yowza you’ve had a brutal couple of years.
I’m no doctor, so I can’t really tell if your vasculature is obviously compressed. My doc had me go through a number of ultrasound to try and see carotid compression, he said that it can be hard to tell by looking at the ct as something appear closer together or farther apart than they really are.
Did your styloids get measured? They do seem to be angled inward, and like you said, with your neck troubles they may not even have to be long to give you issues.
I hope you hear back from the docs soon! Dr Cognetti has been awesome thus far and a lot of people on here speak very highly of him.

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I guess I should note that my question is more, has anyone had vascular Eagles with normal length styloids? And whether or not my styloids look like they could be a problem, despite not being terribly long. The vascular neurosurgeon was very confident about the compression of my IJs, though I’ll be getting a second opinion on that - Eagles or not. In 3D, my IJs look like a straw that ha been pinched shut at my c1 level. I haven’t had my styloids measured.

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We're not doctors here, so not experts.... Have you been given a measurement for your styloids? It's just that different doctors use a different 'average length' to decide whether they're long or not. The average most doctors use is 2.5-3cms, but some doctors say they don't consider styloids to be long unless they're over 4 cms! Some members on here have had problems with styloid processes of 2.5-3cms, and even shorter, it depends on the angle as well. Yours look on the long side, to be reaching past the C1 process, and are both quite angled at the ends.

The one side I've had removed was 4.8 cms, but the doctor said that it was compressing the jugular vein along most of it's length, he had to take it off at the skull base to remove all the compression, so I presume it would've caused a problem however long it was. The fact that yours can be seen by your vascular neurosurgeon to be compressing the IJV would be enough for me to decide to have surgery. It is such a tight space in that area, with many of the cranial nerves exiting the skull, plus the major blood vessels, that even a small shift, such as would've happened with your fusion surgery, could be enough to bring the styloids into contact with something important!!

Hope that Dr Cognetti can help you!

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I emailed my vascular surgeon and explicitly asked him about my styloids, he said...

"Your jugular veins do appear to be compressed in part by the styloid and C1 on both sides. In cases like this, stents are typically not “strong” enough to push the bone away, but what tends to happen is that the stent gives the vein some bulk and allows it to move or roll out of the way. A lot of people note improvement after the stent is placed in the jugular veins. However, your results may vary. Again, it is difficult for me to say what you may benefit from as you will need to undergo an angiogram to answer some of those questions."

So it appears that YES, my styloids are a problem. Now I guess the question becomes, will a stent work? Or do they need to be removed? On CT, you can actually see my left styloid as low as my C2 slices, though my right styloid is closer to my C1. My guess is that I will need surgery..

I am trying to narrow down whether my styloids might be causing some of my neck pain. Can anyone describe the type of pain it would cause or location? What are other symptoms of styloid issues outside of the vascular problems?

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The stent question is an interesting one- my doctor told me after the styloidectomy that they can put stents in, but said that these can often cause pain, don't always work well, and can't be removed once they're in. (Things have improved loads with surgery, but I still find lying on that side uncomfortable, and still get pulsatile tinnitus in that ear.) However, one member (Chromechaser66) has said that he had stents put in as the carotid artery was affected by the styloids, and is really happy with the results; his doctor felt that the surgery was too risky. So the choice of stent vs. surgery is a tricky one, I guess you'd have to ask the doctor more about that one- although I personally think if a doctor is confident to remove them then I'd want them out the way! I'm happy that I feel so much better, so am waiting for the other side to be done.

The neck pain people get varies really, depending on the angles etc. of the styloids. Pain when turning your neck is very common, pain when swallowing, pain under the jaw, pain in the front of the neck, some people have pain going up into the back of the head, headaches. Some people find that the styloids are pressing on nerves, so you can get pain along the lower jaw, face, temples, toothache. Earaches or sharp stabbing pain in the ears is pretty common too. One member did a survey a while ago, but you can see the results, and get an idea of the symptoms members have:

http://forum.livingwitheagle.org/forum/topics/results-eagle-syndrome-survey