I’m in an online group for another condition, and someone mentioned they had just been diagnosed with Eagle syndrome and wondered if anyone in the group had it. I do, so I reached out to her. She was in a top-tier St. Louis hospital for left-sided headache and neck pain. She had CT and CTA of head and neck with and without contrast. The main doc asked for ENT to come by and consult on it. The scan showed: “Marked bilateral mass effect on the proximal internal jugular veins by the styloid processes of unclear clinical significance. These findings can be associated with styloidgenic jugular venous compression syndrome.”
The ENT didn’t even read the scan report or look at the scans. He said he doesn’t believe in Eagle syndrome because it doesn’t exist, so he knows her symptoms aren’t related to it. He had no other recommendations for her and totally brushed her off.
She also has other medical history of relevance: 30-35 years of tinnitus. Pain in left side jaw area. History of bilateral neurogenic thoracic outlet syndrome. Status post-rightsided thoracic outlet surgery earlier this year. She will have the left side TOS surgery done in December. She also had laminectomy and laminoplasty on four levels at C3-C7 done a year ago.
Questions: Does this sound like Eagle syndrome? Is there something else from her history that could be causing this or be relevant to Eagle syndrome? Can you experience symptoms just on one side even when the scan says it is bilateral? Are there any surgeons who deal with Eagle syndrome in the St. Louis area?
The scan didn’t mention the length of the styloids, but the fact that it mentions they are compressing the internal jugulars seems relevant.
Thanks for any help you can give! She gave me permission to ask.
@WillisWay - Thank you so much for going to bat for this patient! It sounds pretty certain that she has styloidgenic jugular venous compression syndrome. Crazy that would be suggested in her radiology report & the ENT would brush her off. Too often we hear of members initially being told they don’t have ES or vES because it’s too rare even though symptoms & scans point to one of those diagnoses. A comment like that shows complete ignorance about ES & it’s symptoms on the part of the doctor. Not only that, cervical IJV compression can coincide w/ vascular TOS, & though you mentioned hers is neurogenic, I’m wondering if it has a vascular component as well. We’re seeing these problems side by side more often in our members who have Hypermobile Ehlers Danlos Syndrome (EDS) so it’s possible she also has that but it hasn’t been diagnosed.
Please suggest to the gal on the other forum that she join this one so she can learn more about ES.
I also would refer her to this article:
We have one doctor on our list for MO who’s mentioned he’s done vES surgeries, but we don’t have any members who’ve seen him so can’t verify that or how well the surgeries turned out. If your friend is willing to consult w/ an out of state doctor we know has experience w/ vES, I’d suggest either Dr. Costantino in NY or Dr. Nakaji in AZ as they’re the two who would be able to give her appointment the soonest.
Dr Osbun, Washington University , St Louis
[Joshua W. Osbun, MD - WashU Medicine Physicians]
( Joshua W. Osbun, MD - WashU Medicine Physicians ) Has told one member he’s done lots of surgeries, is aware of VES.
I hope that your friend can get some treatment, it’s crazy that she was dismissed by that ENT! Certainly sounds as if it’s worth her pursuing this…She’s very welcome to join here too if she wants some sympathetic ears, well done for helping her though
Yes, I invited her to Living with Eagle and I think she joined. But she said it was hard to navigate, so I’m working to help her get some input on her case. Thanks so much, Jules!
