Question for Canadians

Thanks Isaiah. I emailed Dr. Monteiro’s assistant earlier today (and just my luck she is on vacation) and I spoke to Dr. Cognetti’s assistant and she said to mail my CT scan disc which I will do this week. She said that Dr. Cognetti can then do a phone consult in one week. ONE WEEK!! Love Canada but us Canadians are use to waiting 6 months to see a specialist. I almost fell off my chair. I might be eating Philly Cheesesteak sooner than I though (although chewing makes me feel worse - so maybe I’ll pass).

I still would like to get more Canadian doctors’ names as paying out of pocket will hurt (my future retirement date that is).

Thanks for the great advice.

And thank you Jules.

Does anyone else have any other suggestions? I am seeing my GP tomorrow and would like to give him names so that he can start making referrals as I suspect he will have no idea who to refer me to and I fear seeing one of the ENTs who discounts ES and says that surgery is not an option. Once a report like that ends up in a patient’s medical file, it taints all future opinions.

Dr. Monteiro’s assistant is on vacation, really? Does he cease to function when (s)he is gone? There’s no one else in the office who could schedule an appointment for you? I’m sorry. I guess I’m used to how things work in the U.S. Seems kind of lame that there would be no back up person in his office to take care of his current or up & coming patients while his assistant is away. Well at least I’m glad that you were able to get an appointment w/ Dr. Cognetti so soon!

I’m sorry that having to pay for surgery in the US will set back your retirement. That’s definitely a big OUCH! Dr. Samji used to (& I expect still does) charge less (like half of the total charged to insurance) for cash paying patients. It would definitely be worthwhile for you to discuss that option w/ Dr. Cognetti.

Canada is a big country. I find it hard to believe there aren’t some doctors there familiar w/ ES, & who have done surgery for it. At this point, though, they are “buried treasure”. It would be great if they were discovered!!

Lol. In Canada, you need a family doctor to refer you. No specialist will see you without a referral and unless it’s an emergency, we wait to be seen. Rich or poor. We all wait. On a very positive note, god forbid we get cancer, we get seen immediately, the care is fantastic and free. All we do is hand the secretary our health card, she swipes it and that’s it. Nobody loses their house in Canada because their uninsured. Positives and negatives.

I’m on a mission to find a Canadian ES doc. If I’m successful, I’ll let all the Canadians on this site know.

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AWESOME PLAN! YOU GO, GIRL!! You just need a “treasure map”! :joy:

There may be some clues to the buried treasure here.

Seenie from ModSupport

Thanks Seenie. It seems that almost all the doctors mentioned in that post don’t do the surgery anymore. Except Dr. Monterio which is unknown for now. Thanks for searching.

Canadian system sounds like UK- waiting ages, can’t self refer, but at least it’s free! Good luck!

I am beyond devastated. I spoke to my work colleague, an ENT. He said that there are no surgeons in Canada who operate on Eagle’s Syndrome. He said the surgery has high risks, many people are worse after surgery, the surgeons who did it here in the past did not get good results and that’s why they stopped, the American system is a business model which is why American physicians may be willing to do the surgery despite poor outcomes, the people on support boards promoting the surgery may be the few that got good results, most do not, many people have elongated styloids, many structures compress the jugular vein, including an enlarge thyroid (so compression of the jugular is no big deal) … I’m paraphrasing him. I was too upset to write notes as he spoke to document what he said exactly.

I am so upset and confused.

:confounded::confounded::confounded::confounded::confounded:
I’m not pleased about all this negativity swirling in your head. That’s the last thing you need right now!!! I’m at a loss over some of his theories.

I spoke to a very wise friend who is both an RN and a naturopath. She made a very good point. She said that maybe the same doctors who discount Eagle’s Syndrome are the same doctors who tell patients that chiropractors won’t help their spinal pain. Enough said.

Don’t let this one doctor’s opinion/ideas derail you! You are doing great - keep chugging along! There’s a light at the end of the tunnel - we’ll help you find it!! Choo-choo!!! :tram:

Unfortunate that emoji was an oncoming train, lol! I know we all feel like that sometimes in this journey so I’ll leave it there for a laugh but really you’re on the train and you’re getting to your destination. It’s just taking longer than you want and the train is noisy and smelly and the guy next to you has body odor. But you’ll get off this crazy train one day! YOU WILL!!!

Hahahahahahaha.

You crack me up.

I have just found this article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5743131/ written by authors mostly from Canada (U of T, etc.). It might be useful to contact them if they are still working in this country.

Thanks VDM for your posts and for sending the articles. Welcome to Canada! We love having Aussie’s in our lovely country.

I will try to track down the doctors who authored those articles.

I will definitely update you if I find anyone in Ontario who can help us.

In response to what the doctor told you, I have this to say - the most likely reason the surgeons in Canada were not getting good results from their ES surgeries is because they a) don’t know enough about ES (maybe haven’t read enough scientific/research articles :wink:); b) they haven’t removed enough of the styloid or calcified ligament to make a difference; c) They assessed the results too soon after surgery.
Many doctors are very conservative when it comes to ES surgery & want to do the bare minimum in removing the calcification that’s causing a problem. The better surgeons have learned to remove as much as possible in order to achieve a good result. There are many more success cases posted on this forum than there are failures. ES surgical recovery requires about a year before the final results can be fully assessed. That said, some people heal more quickly & others take a bit longer. Nerves are very slow to heal & there is simply no way to do this surgery w/o irritating some major nerves.

Isaiah

I totally agree!

Thank you.

I think it’s in the Newbies Guide section- just on my phone so can’t check right now- there’s a research paper giving the success rates for surgery in one study. They were pretty high, & the ones which didn’t help so much the authors believed that it was because not enough of the styloid had been removed- so it does work!
I was getting pretty scary symptoms from my compressed jugular veins, I would say that is definitely not normal, nor common, no-one should have to live like that! After my 1st surgery I felt lots better within a few days- it does work, with a skilled surgeon!
It’s so discouraging, no matter how prepared you are it can all go out the window somehow when faced with a supposedly knowledgeable doctor who doesn’t believe you, but you have to be strong & keep pushing. Are there any skull base surgeons you could ask for a referral to?
Let’s hope that the paper Vkm mentioned is helpful, fingers crossed for you…

Jules. What were your symptoms?