I need help badly
Attached is the pdf which emma, heidemt and christian22 put together- I hope. There's several in Canada, but not sure if they're near you!
132-OtherCountryEaglesSyndromeDoctors030315.pdf (19.4 KB)Sorry; seen one of your other posts. I'm guessing they're all a long way away? I think most members would agree- you have to be prepared to travel to see someone experienced with ES!! It might be worth researching hospitals in your area, and emailing ENTs or skull base surgeons perhaps, to see if any would have a look at you otherwise? Good luck....
I'm not sure if you've been able to access the doctors' list. If not, I wanted to let you know that my wife & I live in North Bay, Ontario. After a frustrating 4-year journey through the medical system, we were referred to Dr Ian Witterick, otolaryngologist @ Mt Sinai Hospital in Toronto....he & his associate [Dr Monteiro] were the first doctors we met who understood what we were talking about. They performed a partial bi-lateral styloidectomy, & simultaneous tonsilectomy, on my wife in February, 2014. They were wonderful...a breath of fresh, respectful air after the response of most other practitioners my wife encountered.
CONTACT INFO: Dr Ian Witterick, otolaryngologist, Mount Sinai Hospital, 416 ■■■■■■■■, ext 8313
thanks so much I am going to call it just sucks because my doctor wont order a 3d image so I have yet to be 100 percent certain but I have all the symptoms and my dentist showed me the styloid process in a panoramic x ray of my mouth and neck where u can see it u .... im from a small town and my doctor is such a POS I was almost ready to commit a crime just to get an answer and im not a bad person this has been going on for 2 years now
how is youre wife ? better now ? no symptoms anymore all healthy ?
READY2die said:
thanks so much I am going to call it just sucks because my doctor wont order a 3d image so I have yet to be 100 percent certain but I have all the symptoms and my dentist showed me the styloid process in a panoramic x ray of my mouth and neck where u can see it u .... im from a small town and my doctor is such a POS I was almost ready to commit a crime just to get an answer and im not a bad person this has been going on for 2 years now
if it is eagles syndrome im friggin sueing my doctor office for malpractice
My wife is improved since having the surgery. She still experiences some pain as she has some other issues at play [TMJ,...] & possibly some residual nerve damage from the styloids. However, her pain is less severe; & she no longer feels so bad she'd like to die.
IF ANYONE IS IN CANADA ONTARIO I FOUND SOMEONE WHO HAS TAKIN THE STYLOID OUT OF MULTIPLE PATIENTS HIS NAME IS
DR John Yoo
phone number is 519/685/8567
I will let u fellow patients know whats up when I talk to them ..got the referral sent to them today by my family doc
Great news! Hope that you get an appt. soon and it goes well.
Hi David. I too live in North Bay, ON and was diagnosed April 22. I am lost!! A referral was sent to a Dr. Ishak in Sudbury but I have heard nothing and based on any research I have done, it doesn’t appear as though he has experience with ES. I’m hoping for a response from you if you would be so kind. Thank you David. Would just be nice to talk to someone who is/has gone through the same thing. This condition has changed my life.
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Hi Patch
First of all, I need to let you know that it is my wife, Cindy Lou who was diagnosed. As she really couldn’t do any computer stuff at the time, I did all of the on-line communications.
Secondly, we must express our regret that you are having to deal with this awful syndrome…we felt so alone, abandoned by the healthcare system & @ sea about what to do. It was only after Cindy Lou pushed the health care system through contacts she had @ Mt Sinai in Toronto that she was able to get the help she needed. Cindy Lou is a registered nurse & this was of some help in negotiating the journey.
The entire experience changed her… & our…lives drastically. Hopefully we can be of some help in minimizing some of this upstream swimming for you.
Cindy Lou asks the following:
1a who diagnosed you?
1b. how did they diagnose ES?
2. if they relied on an x-ray, do you have a copy of it?
3. if you haven’t already started, she encourages you to maintain a file of all stops in
your ES journey
4. is your ES uni-lateral, or bi-lateral?
5. what symptoms are you experiencing? (ie: face pain, jaw pain, inability to lower your
head…need to hyper-extend your neck to relieve the stabbing pain of the
styloids(s); urge to keep eyes closed & withdraw from social interaction)?
6. encourage you to maintain a daily journal of your experience. This is a painful but
important record to keep (dates, time of day, type of symptom, related medical
appointments, outcomes).
7. do you have a dentist? if yes, has he/she been involved in the diagnosis…we ask
this because dentists are often the professionals who identify the pathology. Cindy
Lou suggests that you see your dentist about the facial pain with hope that you
could have a panoramic x-ray of your styloid(s) (if yes, you should ensure you
have a copy)
Sorry if this seems impersonal, but this is the self-assessment I found I had to do as I waded through a cumbersome, often discouraging medical system that actually knew little about the syndrome I was experiencing. You have probably read about a lot of such experience on the Eagle Syndrome web-site.
This is preliminary to you & Cindy Lou figuring out what help she (& I) might offer.
David & Cindy Lou
cldbrooks@sympatico.ca
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OMG!! I’m crying right now as read this just knowing there is someone else here going through what I’ve been going through. I’m not good at txting. I only have my phone so just bear with me. I haven’t even read all of your message, I was just so overwhelmed with emotion. I’m going to finish reading and I’ll get back to you. Warmest, most welcome regards. Mona
Hi @Patch, here is the link to the Doctors page: Doctors Familiar With ES Countries Outside US 2019
I’d suggest you ask your current GP or ENT to refer you to a doctor who has experience with Eagle Syndrome, typically a head and neck surgeon, and hopefully, save yourself a long journey and multiple doctors. With this syndrome being rare and many doctors unaware of the syndrome it’s vital you advocate for yourself. Best of luck to you Patch. 
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Good advice from David & CindyLou, & have a look at the Doctors List as Weezie suggests & see if there’s anyone you could be referred to- you may have to travel though…otherwise if there’s no possibilities, I’d suggest that you look into whether you could see an Otolaryngologist/ Skull base surgeon in your area, or as Weezie suggests a Head & neck cancer surgeon, as they operate in the same area as the styloid processes.
If you’re getting facial pain, it sounds like it could be nerve pain, so there are medications which can help with that; there’s info in the Newbies Guide Section about it, here’s the link:
I’d suggest that you see your GP/ PCP & ask to try one of the medications if you haven’t already, they take a little while to build up in your system, so you may have to be patient.
I hope this helps, ask anything else, & let us know how you get on…
Thanks for coming back on after all this time with advice! Did Cindy Lou have surgery, & how is she?
Patch,
You can privately email David/CindyLou via this forum. Just click on David’s name as it appears above his post to you that will put you on a page where you can begin a private conversation w/ him & Cindy Lou. I’m so glad he has good advice for you.
Weezie, who sent you the doctors’ list just had ES surgery in your country as well. She’s another person you could email to discuss details with.
I hope you can make forward progress soon!
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Hi Jules
Cindy Lou had a bi-lateral styloidectomy (internal approach) in 2014…removed 2 cm from each styloid, after removing her tonsils.
The surgery has reduced, but not eliminated her facial pain - the pain is much less intense, & is no longer 24/7…now occurs in response to precipitators such as cold &/or moving air, strong caustic odours, intense activity. This seems to reflect residual nerve damage that is mostly manageable with heavy duty pain killers & avoidance of precipitators. Cindy Lou has been able to re-engage with life since the surgery, although not with quite the intensity of pre-ES days.
Thanks for your interest Jules!
David (& Cindy Lou)
PS: we have strayed from the site for some time now, but we’re encouraged by signs that the medical system may be catching up. The fact that Patch was able to be diagnosed by an ENT here in North Bay is wonderful. When Cindy Lou was in such dire distress 9 or so years ago, it was a very long, all-too-often fruitless journey through many services & specialists - several 4 hours drive away - before we found a medical doctor who could diagnose the problem EVEN THOUGH her dentist had accurately identified what was happening via x-ray before the journey.
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Thank you Weezie for your response. Yes I have seen this list but was putting my faith in seeing someone closer to where I am but it’s looking grim. It’s been 2 months since my referral and have heard nothing. Covid related I’m sure, probably combined with little knowledge of this condition. I need to call the referral myself which I’ll get on. I’ll try to keep posting as I travel through this journey. Everyone is so supportive which I am so grateful for. It’s a very lonely disease.
From what I’ve read on here, Canadian waiting times seem to be pretty much on a par with the UK where I am 