thank you! this would be fantastic. I was told that my styloids are not very long however Dr Osborne was willing to do the procedure at 20k each side. I am consulting with a neurosurgeon in Mexico that may do the procedure too. Please know I also have neck compression and TOS symptoms so that may be the reason no one wants to touch me - too complicated! It is not fair though, patients should be helped
No, this is not fair. Twenty grand each side? This is not a cosmetic procedure. Have a look at the Kendra Scarrow story. She went to Mexico. 
Have you asked about out-of-country treatment? There are some excellent, experienced surgeons in the US. @Isaiah_40_31 has some stories about that.
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Sorry, that is Kendra Scarrow. Autocorrect … 
I think Dr. Samji “only charges” (that’s a little tongue-in-cheek because it’s still a lot of money) about $10K USD for ES surgery for people who don’t have medical insurance. In addition, surgical prices here can be negotiated to some degree if you are cash paying. I expect it’s the doctor’s practice business office that you would need to contact about that. Snapple2020 wrote a somewhat detailed post on that topic not too long ago. Here’s the link. Reading the whole thread will be helpful for you. Zoero is having surgery w/ Dr. Samji in Sept. You could try sending her a PM to see what she learned through her negotiation process.
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To be fair, my understanding is that Kendra didn’t make it for the next round after the first surgery failed (?)… Not sure about the reasons, though. However, ES sufferers, I guess, know what she must gave gone through…
vdm,
She had multiple health issues that compounded her ES health challenges. In some ways, I feel the Canadian medical system failed her but another perspective is that her health situation may have been unresolvable. This is a “God only knows” situation.
We had another member who went to the Mexicali doctor close to the same time for ES surgery, & I believe it was successful & without complications.
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Here are some more Canadian doctors mentioned:
https://meeting.peripheralnerve.org/abstracts/2021/ODP-Clinical27.cgi
Kitty Wu, MD 1, Fawaz Siddiqi, MD MBA FRCSC2, John Yoo, MD FRCSC2, Douglas C Ross, MD MEd FRCSC3 and Thomas Miller, MD FRCPC2, (1)Roth McFarlane Hand & Upper Limb Centre, London, ON, Canada, (2)Western University, London, ON, Canada, (3)Roth | McFarlane Hand and Upper Limb Centre, Division of Plastic Surgery, The Peripheral Nerve Clinic, London, ON, Canada
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Thank you again, I’m starting to put together a list of all the research paper authors…
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I was referred to Dr Yoo - referral declined. Reason: EMG to support CT findings(?) My family doctor does not know what is needed for EMG. Also had referral to Dr Ross, it was declined too. Very strange that they publish articles and no longer help patients.
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That’s sounds a bit strange indeed! Never heard that a EMG is needed. That sounds really frustrating…
I think EMG means Electromyography. It measures the electric activity in muscles. A neurologist should be able to do a EMG. It isn’t a very meaningful investigation a far as I know. - And from what area do they need a EMG? I would guess the shoulder neck region…
Will you go for an EMG and then have a referral again? Wishing you farther good luck for finding a doctor.
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I’m really sorry to hear about your continuing struggles to get a referral to someone who can help you. I totally agree w/ TheDude. It’s terrible that these doctors do the research & write papers based on their surgical findings then refuse to help patients who have been diagnosed with ES. We have found that to be true in at least one case in the US as well.
I hope very much you are able to make some headway soon.
Yes i agree, healthcare in Canada - Ontario - is terrible if you have a more complicated situation. I’ve had the same experience. No ENT’s will even see me and i have a CT venography that clearly shows IJV compression and elongated styloids.
Prior to getting the CT confirming my case - the doctor I saw at Cleveland Clinic [name removed by ModSupport in accordance with our site etiquette] in Toronto was one of the the most arrogant, incompetent people i’ve ever met. He flat out told me that it was impossible for me to have Eagle syndrome because i still had my tonsils. then he told me to go see a psychiatrist. I pleaded with him to give me a requisition for a CT of that area and he refused. Impossible. And i can clearly feel the bump on my neck. Everyone can feel it, the doctor that referred me because of it can feel it, but he said - It isn’t there. what a joke - we are left to suffer at the hands of these incompetent, arrogant medical people.
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Hi Tomas10,
I’m really sorry for the horrid experience you had. Sadly, it’s a somewhat repetitive story that comes from our Canadian members. I don’t know how a country as big as yours could contain so few doctors who are familiar w/ ES. I guess different countries’ medical schools educate w/ different health emphases. I agree that arrogance DOES NOT belong in the medical field, compassion & caring, however, do.
Would you be able to come to the US for help? There are some excellent doctors in Philadelphia, Pennsylvania, Boston, Massachusetts, & other northeastern states. I can send you names if travel is a possibility for you.
Hello,
Absolutely I will travel and fortunately I can pay for a surgery and absolutely will because I can’t live like this any longer.
A list of the top doctors in the northeast that have lots of experience would be amazing.
Thanks
tom
Hi There Shane,
I live in Edmonton and as far as I can tell the most experienced surgeon in Alberta is Dr. Dan O’Connell. I met him and also chatted with some of his former’s Eagle patients. It was all a positive experience. He takes the bones out via the intraoral approach. Unfortunately the waiting list is very very long due to COVID right now. Unless you are willing to wait over 6 months for the surgery, I would say best to look elsewhere.
I’ve found getting timely help with this problem (<6 months wait) in Canada to be impossible. It seems to be a big deficiency in the system up here. Travelling to the US to one of the really experienced surgeons may be worth the extra expense and hassle to get treatment in a month or two and start healing.
Hang in there - none of this is easy!
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Thanks for this, Dizzylady! This is the first hopeful name we’ve received for Canadian members. I will make some inquiries asap.
@Isaiah_40_31 could you add Dr. O’Connell to the Drs Directory, with a note that Seenie is working on it? Thanks, Isaiah!
Seenie
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TJ here (BF Co-executive Director and Science Officer) no one would like to call out by name these quacks than me. But we can’t. Let me tell you a story and one That Applies to Eagle as well a number of other highly misunderstood Rare Conditions and a bit about my temper…
Several Years ago we started a Community for another rare condition just as I was coming on board from a member of one of the communities to a larger role with Ben’s Friends. On my first visit to this community I nearly had a stroke (I actually had one later on totally unrelated to my temper but rather my own rare condition) It had been taken over by a number of “Fan Boys” (ladies actually) of a non board certified "“Neuro surgeon” doing a highly questionable procedure to “cure” this condition. Our community had become patient recruiting grounds for a fella I call the “Butcher of Great Neck” he was a part of a number of “specialty Clinics” that had sprung up around the country (USA).
In short order we cleaned up the community poofed his confederates and all should have been well. It wasn’t. These “ladies” went after me personally stalked me where they could and went after Ben’s Friends on Social media. That was stopped in short order though they are still after me and comments still pop-up from time to time.
I had life before Ben’s Friends and a lot of friends in medicine. My temper kicked in and I started asking around. It didn’t take long to find there was a concerted effort to put not only the Butcher out of business but everyone of these "Specialty Clinics out of business. I shared what I knew and eventually they all shut down. Some quit others “retired”. 2 left the country to avoid prosecution and at least one in Illinois was prosecuted and is serving hard time for manslaughter. The “Butchers” clinic was shut down the director “retired” and the Butcher himself was reprimanded by his state medical board for a different breach of ethics. He also most recently lost 140 million dollar liability suit for crippling a 7 year old. (should have lost his license and got free room and board from the state) But wait there is more!
Guess who showed up on this site doing research for this underserved condition, and a cure he could offer? We vet positive reviews too… He and his fans never made it far on the site. the bottom line is we never want to go there again.
One would think that in a country with a national healthcare system and strong oversight (Canada) this couldn’t happen but it does. On this site we recently had another Clinic mentioned by name in a similar light. This one happens to have a huge budget and legal team. We simply can’t Play.
So here is whats happening in Canada. There is a Clinic (not alone) tapping into a market of people who don’t want to wait for anything but have loads of money. You go to this Clinic and they give you red carpet treatment, and ship you down to the mother ship in the US where you get concierge care and a big bill. The sketchy descriptions in their web site mention OHIP-covered services, but we’re guessing that these are only the diagnostic procedures. One of our members recently went to a vein clinic. The testing diagnosis and treatment plan was free (covered by OHIP). The treatment cost big bucks. All we can say is BE AWARE. I wish we had the resources to fight them, but we don’t. I’m sorry.
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I get it.
Just venting –but somebody needs to let the world know how bad it is here. Too bad the lawyers won’t allow the truth to be told.
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He’s already on it.
If you ever want to share your experience with a particular member, you can send that info via a private message. That’s what we’ve done with The Butcher who TJ mentioned. And when members let us know about a bad experience with a doctor if they’re on our list we do remove their names.