I am looking for Canadians that have seen Canadian dr. familiar with diagnoses of ES as I have found surgeons that do the surgery they only take patient once diagnosed already, I know it strange but that’s what I’ve gotten so far.
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https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us-current-list/4753
Hi shane,
Here is the doctors list outside the US if you haven’t seen that yet.
Best regards
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Shane, I hear you and we have several other members here who have encountered the same problem. As far as we know, there was a surgeon in Toronto, but I think he has retired.
This is truly a difficult place to find yourself, and I’m sorry you’re stuck like this. Canada has a many top surgeons, but this seems to be a bit of a black hole. Meanwhile, has your doctor explored the possibility of seeking out of country treatment? You might be wise to start looking into that alternative.
https://www.ehealthsask.ca/services/resources/Pages/Health-Coverage.aspx
I’m guessing that if you were to apply for this, they would do their best to find someone north of the 49th.
All the best in your search!
Seenie from ModSupport
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Hi I am still trying to find someone. Looking at possibly going to Dr Osborne in USA because it does not seem to be a surgery surgeons in Canada want to do. I think my IJV is compressed and causing symptoms. Loud ringing every time I yawn. Been trying to get a venous mri of head / neck to confirm but no one will order it. I may need to go out of country even for this diagnostic test, it is sad that surgeons in Canada don’t help those with rare syndromes 
I’m sorry your efforts to find a doctor in Canada haven’t paid off. If you’re thinking of coming to the US, it would be worth your time to get a couple of video consults from doctors here i.e. first & second opinions to discuss total cost of surgery, surgical strategy (hopefully you’ve read some of the posts w/ thorough lists of questions to ask when interviewing a doctor. If not let me know & I’ll send you one).
As far as we know, Dr. Osborne is a great surgeon but hasn’t done a lot of ES surgeries. Finding a surgeon experienced w/ that particular surgery is a plus. Perhaps interview him & Dr. Samji or one of the doctors at UCLA Med Center (Mendelsohn or Chhetri since it sounds like you might head Los Angeles direction).
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A CT venogram would be a better diagnostic test to show vascular compression bmcdiddie, if you can get one, & if there’s any position you notice symptoms worse in, then try to get a scan done like that. I hope that you can find someone to help you…thinking of you.
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Hi Shane - any luck with this? Why the heck is it so hard to get anyone here to take a good look at Eagles Syndrome? What province are you in? I am in Ontario. Saw one ENT who has done this surgery before - but he does not see interested in doing a procedure, or even investigating any further. The last is what really bothers me - no investigation at all! No 3D imaging, no vascular study, absolutely nothing! I even have a report from a US surgeon that evaluated the CT and comments that the styloid may be pressing on the internal jugular vein. I have constant SCM and trap spasm consistent with accessory nerve compression. A vascular surgeon even said to get it evaluated more by the ENT but nothing! Good grief our healthcare system in Canada is atrocious at times
Here is an Article from 2001 mentioning Dr. Leslie Diamont in Cambridge, Canada.
Maybe it is worth to ask for help there?
And another one mentioning some Neurosurgeons in Toronto, Kanada:
Abdulrahman Aldakkan
University of Toronto | U of T · Department of Neurosurgery - Department of Medical Imaging
Nebras Warsi
University of Toronto | U of T · Division of Neurosurgery
M.D., C.M.
And:
Authors
Joel W Howlett 1, Matthew Hearn 2, Cameron Bakala 2
Affiliations
- 1Division of Otolaryngology - Head and Neck Surgery, Department of Surgery (Howlett, Hearn, Bakala), University of British Columbia, Vancouver, BC; Division of Otolaryngology - Head and Neck Surgery (Hearn, Bakala), Kelowna General Hospital, Kelowna, BC joel.howlett@alumni.ubc.ca.
- 2Division of Otolaryngology - Head and Neck Surgery, Department of Surgery (Howlett, Hearn, Bakala), University of British Columbia, Vancouver, BC; Division of Otolaryngology - Head and Neck Surgery (Hearn, Bakala), Kelowna General Hospital, Kelowna, BC.
AND:
Good luck.
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Your Dudeness
Thank you for all of that. I think you’re right, contacting the Canadian researchers in those articles is probably the best thing that our Canadian friends can do. It will be a good start, anyway.
If anyone here can start documenting contacts they have had and information they glean from contacts, it will be appreciated by all. The moderators might be able to help by giving suggestions for how best to keep track of what you do, and set up a doctor list.
We have a larger Ben’s Friends Network project started that would include information such as this, but it isn’t ready to test-drive yet. It may be soon, though, so please keep posting/sharing your information.
If any questions or suggestions come to mind, post here, or use the About/Contact tab above to contact a Moderator or one of us at ModSupport.
Seenie from ModSupport and Admin
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Thanks for those research papers, I keep planning to go through all the papers & make a separate doctors list of those as potential contacts, but haven’t got round to it so far…you’ve been really helpful with all this research 
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TheDude,
You’re THE BEST!! Thank you for always being at the ready to share valuable resources i.e. article links in a timely fashion for our members. So grateful to have you as a forum member!! 
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Thank you for all your kind words. It is my pleasure. Hopefully our Canadian friends can find help. - Found one more article (2014) from Montréal, Canada:
https://onlinelibrary.wiley.com/doi/abs/10.1002/hed.23675
Yael Bensoussan, University of Montreal, Quebec, Canada
Laurent Letourneau–Guillon MD, FRCPC, Division of Neuroradiology, Department of Radiology, Centre Hospitalier Universitaire de Montréal, Quebec, Canada
Tareck Ayad MD, FRCSC, Division of Otolaryngology and Head and Neck Surgery, Centre Hospitalier Universitaire de Montréal and Hospital Maisonneuve–Rosemont, Quebec, Canada
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I forgot to say, that I thought of a backward-search too. As Seenie from admin already noted, these surgeons/researchers names are maybe good starting point for that. They might tell you names of doctors to go first for getting a referral to an ES specialist. I mean the specialists should know the doctors ES patients came from…
BTW: It sounds pretty much the same like here in Germany. Most of the doctors didn’t listen and tried to get rid of me. The only difference is that it is obviously not that complicated to get an referral to a specialist here and that foreign country doctors are accepted in rare cases.
I think it is a big issue, if you are stuck as reported in the healthcare system, that shoud be reported to officials or politicians or even the media. Maybe it is worth to write an short email/letter to your local MP (or minister of health or similar) and tell them this grievance and ask for remedy. I know that it would be too much to expect short term changes from that, but maybe it pays off in a long term view.
At the same time you could try pushing official rare disease networks to start dealing with ES and providing help. ( I’m also trying to push the german orpha.net to include ES to their directory.)
Wishing all Canadian ES warriors good luck and maybe you can report your experiences and new findings here. That would be great.
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Here are again authors from Toronto mentioned and also Calgary, AB:
http://www.ajnr.org/content/cow/08102009/tab-diagnosis
Section Editors: Matylda Machnowska,1 Anvita Pauranik,2 Vinil Shah3
1University of Toronto, Toronto, Ontario, Canada
2University of Calgary, Calgary, Alberta, Canada
3University of California, San Francisco
…one more:
Authors:
- Amit Sunil Chopra,
- Daniel Alexander Goodman,
- David Carr,
** Division of Emergency Medicine, University of Toronto, Toronto, ON, Canada
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I am exhausted looking in Canada. The one specialist in my province won’t consider my case or image further. Said it is likely TMJ. I know there is more going on than that - likely involvement of styloids at the atlas level. Attached is a couple 3D images based on the excellent input of people in this forum. I have a measurement of 4.05 cm on the left from a US ENT. Also have a note from a US neurosurgeon that the styloid seems to be touching the internal jugular vein. Showed this report to the ENT in Canada and was told they were not experts on ES. Said the styloids were not long enough and showed me the door. Why not evaluate with a contrast CT? Or venogram? Or perhaps they are right and the styloids are not contributing to symptoms? No one here seems to want to investigate or treat Eagles Syndrome, I was hoping at least for some vascular tests.
I did a phone consult with Oasis Dental. They don’t do much with Eagles Syndrome despite having it listed on their webpage. They tried to refer me to a chiropractor, a friend of theirs of course!
Hi bmcdiddie,
All I can say is the doctors you’ve seen are very ignorant of ES. Your right styloid is not only long but also very thick. Your right one is also thick & very pointed. The thickness alone, even w/o extra length can cause vascular compression & have a sharp tip can really mess w/ the nerves & other soft tissues (vascular & otherwise) in the area.
I’m going to trust that you’ve seen the doctor(s) on our list who are in your province, & they are the ones who are declining to help you. I AM SO SORRY! Is there any way you can travel to another province, or over the border into the US to see a doctor who may help you? We have some excellent ES surgeons in Massachusetts & Pennsylvania. I realize that’s not super close but may be your best chance of recovery.
I wish I could help you beyond making suggestions. It’s situations like yours that make us mods feel very helpless. I will pray for a solution for you. That’s my best resource.
Shane and Bryan
Seenie here, ED at Ben’s Friends. I’m not an Eagle patient, but I am Canadian (as I think you know) and I’m really concerned that our health care system is leaving Eagle patients in the lurch. I want to set something up for you and the other Canadians who come here with no leads. And it’s not a problem in one province: on this thread are people from SK, ON and there’s a newbie on the site, @Zeke from AB.
First step will be a sub-group for Canadians. Because our database cannot be searched by location, I will put out an all member notice about that soon. Then we will put our heads together and share what little info we have. If necessary we’ll put some pressure on influential groups in government or medicine.
Let’s get moving on this. There’s power in numbers. Watch for a notice.
Seenie from ModSupport
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OMG … thanks a lot, eh?
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Here’s a starter. I just found this:
The docs are in BC.
I also found a heartbreaking story: google “Kendra Scarrow”.