I am a fairly new member and this is my first post on this site. I was diagnosed with Eagle’s Syndrome in 2009 by an ENT in Maine. Although he had no surgical experience with this syndrome, he was willing to work with me. Long story short, he performed a “partial styloidectomy” on me in 2009. It was unsuccessful and now I’m living with worsening symptoms and chronic pain (headaches are the worst).
My goal is to find a surgeon successful in dealing with Eagle’s Syndrome in either Boston or Baltimore. If they offer teleconferencing appointments, that would be even better (especially in our current COVID19 crisis).
I would welcome any suggestions and/or experiences from members who might be able to help me in my search for a doctor. I’ve read through some of the posts here and it’s comforting to see so many of you have been treated successfully!
Thank you and I look forward to chatting more about this:)
I’m sorry your surgery was unsuccessful, but it was good of your ENT to try to help you. The key to a successful ES surgery is to have the styloid fully removed at the skull base if possible & to have the stylohyoid ligament removed as well if it has any calcification on it. As most surgeons will only remove one side at a time in bilateral cases, the remaining styloid can cause symptoms that reproduce those from the side already removed & even cross over to the side that no longer has a styloid. I’m not questioning that your surgeon didn’t remove enough of your styloid but want you to be aware that if you have ES bilaterally, you will need to consider removal of the other styloid as well as revision surgery for the first side.
From our doctors’ list, here are doctors in the areas you’re looking. You can use the magnifying glass icon above right to see what members who’ve seen these doctors said about them. Just type in the doctor’s name & the posts where (s)he are mentioned will come up.
We do have a list of doctors familiar with ES, it’s the 2019 US one, in the Doctors Info Section. There’s only a couple in Baltimore though I’m afraid. But as it’s a revision surgery you need, it might be better for you to see one of the really experienced doctors if possible, like Dr Cognetti in Pa ot Dr Samji in Ca, as not all doctors do revision surgeries. Both these doctors do telephone consults which could be helpful in these times…best wishes.
Thank you, Jules. I’ve read mostly good things about Dr. Congnetti here. He seems to have a great reputation for treating Eagle’s. He’s also only a train ride away from Baltimore, which would be very convenient, as my son lives there.
I have seen it mentioned that some surgeons are no longer performing this surgery. Why would that be? Do they no longer believe it is necessary/beneficial? Is it too dangerous? I wonder why so few do it?
Both I guess. Why would any ENT choose not to do or even acknowledge the effectiveness of the procedure? It was mentioned that some doctors are falling from this list.
Some of the doctors that drop from our list elect to stop doing ES surgery because their specialty is cancer & that is where they want to focus. Even though they’re operating in the same area, cancer surgery provides a different level of challenge than ES surgery, I guess. There are ES surgeons who don’t view ES surgery as all that beneficial perhaps because they don’t remove enough of the styloid &/or stylohyoid ligament so their ES patients haven’t gained much from surgery. Those may also be among the doctors who are no longer doing ES surgery. We’ve also removed doctors who’ve retired.