Hi, newbie here. I have been diagnosed with Eagle’s syndrome after a long journey of not knowing what the heck was going on. I have had an anterior scalenectomy for suspected TOS, but that did not help - and now a CT scan has confirmed ES. Unfortunately I live in Ontario Canada and my ENT will not touch it, and she really has no advice for surgical clinics that will help.
SO I am willing to travel out of province or out of country to get this looked as soon as possible. I believe there may be a vascular component to the compression, and the nerves are sending fireworks throughout my upper body.
Can folks provide out-of-pocket surgery estimates from their experience? Willing to travel to US or other countries. If there are any other Canadians can you recommend clinics that have done successful surgeries?
Why the heck do I have eagle bones in my jaw?? SIGH
Your “eagle bones” are more like elephant tusks. This syndrome was so named because Dr. Eagle first diagnosed it in 1937 so it was honorarily given his name. We have members in Canada who have recently had successful ES surgery - Weezie & BFresh. Here’s a link to some of their posts: https://forum.livingwitheagle.org/search?q=Weezie
I will also include the link for our Outside of the US Doctors’ List so you can see the names of ES doctors in your country. I’m also including the US Doctor’s List so you can see who’s closest to you there. Some doctors are more experienced than others so it’s always good to make sure you’re really comfortable w/ a doctor & his surgical strategy before signing up for surgery.
Hello Isaiah,
Thank you, much appreciated! Yes tusks are a better way to describe, I did not know the history of Dr. Eagle.
I have phoned every clinic mentioned in Ontario and it looks like no doctors are interested in treating it here Our health care system is supposed to be world class but really it dismisses so many conditions … I could rant for hours about it.
If anyone else has recommendations then please post. I am in desperate need of help!
You’re not the first Ontarian to tell us that there’s nobody who is interested in treating Eagle in your province. (Actually, our fair province, I’m in Ontario as well.) The two in Toronto who did it in the past are both retired, I believe.
You might want to look in BC, I believe there’s someone there, or in Calgary. That would require funding from OHIP, but apparently that’s not impossible if it’s within Canada. Venturing to the US and hoping for OHIP support is harder to get. I’m wondering about seeing someone in the UK. That might be more attainable, and the UK specialists are very good indeed.
I think you need to start looking out of province first.
If you want to stay w/in your country, Dr. O’Connell recently did ES surgery for 2 of our members - BFresh & Weezie65 so we know he is currently accepting ES patients.
Our health care system is supposed to be world class but really it dismisses so many conditions … I could rant for hours about it.