New Eagle Syndrome Diagnosis - happy to find community!

Wow, they are certainly long styloids! We have had members who have IIH, caused with the styloids compressing the Internal Jugular Veins. Did anything on the report say about vascular compressions by the styloids? Usually if the carotid artery is compressed, the common symptoms are fainting, dizziness, stroke like/ TIA episodes, eye pain, sometimes pain in the neck & down to the chest; do you have any of those, even when your head is just in certain positions? It could be the angle of the CT, although it does look like the styloid is very close to the blood vessel…
Here’s a link to the Doctors list:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Dr B isn’t on our list because of the controversy around his surgeries, as you’ve said. The other doctors who are experienced with vascular ES are Dr Costantino in NY, Dr Hepworth in CO , I think possible Dr Fagen in NC (he is very knowledgeable about vascular issues, but not sure how many ES surgeries he’s done, I think he’s worked with Dr Hepworth in the past), and Dr Nakaji in AZ, although that’s obviously a bit far from you! Dr Hepworth does have a long waiting time, I think Dr Costantino is less of a wait.
Some of the doctors do like more testing to be done, and sometimes have very specific methods/ doctors who do the testing for them, so I wouldn’t suggest looking into having any more scans for now- next step would be to contact any of those doctors (you can search the past discussions for posts about surgeries they’ve done for members), send your scans and reports to them & see who will help you.
Hope this helps!

1 Like