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Eagle Syndrome - Online Support Group

New here from Newfoundland Canada

Diasy,
May I ask your treatments…did you also have surgery?

When I found out that all my problems had a name (and weren’t in my head like my dr thought) , I tried several treatments. Carbamazepine ( terrible) , cortisone/ lydacain injections ( mildly helpful), lyrica ( mildly helpful but made me gain 30 lbs and felt strange) . I am awaiting surgery in Edmonton this summer. My dr is a head/ neck cancer surgeon , so as uncomfortable as my life is, I do not have life threatening cancer so my actual surgery date is unknown :blush:
I get by with a lot of Advil/ Tylenol to manage the headache/ migraine pain, cranialsacral therapy, massage , acupuncture . And frankly after all this time I’m used to the pain.
What do you / have you tried?

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Hi @Diasy, I am in Red Deer County - still waiting to get a diagnosis (since 2015), my ENT, Neurologist, GP, (in Calgary) all brushed me off like I was making up all the symptoms. I also had a panoramic in 2016 and the radiologist actually pointed out elongated styloid processes and Eagles Syndrome, but for some reason, no one wants to listen. I am waiting on a new CT of my neck and sp’s to get a measurement - I have been in contact with Dr. Samji in CA since I can’t seem to get anyone to listen here in Alberta. Would you be willing to share your story and who your doctors are? Thanks.

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I have an appointment with Dr Boyd Lee on Oct 10th. He is a 5 minute drive away luckily.
Ty for that list… I will post updates :slight_smile:

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Dee1976,

That’s great news! Hooray for forward progress! Please let us know how your appointment goes.

6 more days and I have my consult. Anxiously waiting :slight_smile:

PLEASE let us know how that turns out. We’re here for you always!!

:hugs:

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Had my very first consult today with Dr Boyd Lee in Newfoundland Canada, he booked surgery while I was in his office, surgery is Nov 6th. It would have been sooner, but he is off as of next week for vacay :slight_smile: TY TO THIS GROUP, dont know what I would have done if I hadn’t found this site :slight_smile:

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he is doing both sides the same time :slight_smile:

That’s great! Will be a tricky recovery having both sides at once though, there can be alot of swelling…will add you to my prayer list!

So glad you have a surgery date!! Please let us know how everything goes after you have surgery. We would love to have a good ES doctor to add to our list for Canada!!

I will put your surgery date on my calendar & pray, too!

He is already on the list for Canada…Dr. Boyd Lee in St. John’s, Newfoundland Canada :slight_smile:

Thanks, Dee1976. I should have checked the list before commenting. :upside_down_face:

There aren’t many experienced doctors in Canada or anywhere really. I was lucky to have one on the list that’s 5 mins away. What are some must haves for post op to help make things easier on me TIA
Dee :grin:

Dee1976 -

Seamom posted a list of “necessaries” for post op recovery. Here’s the link:
https://www.livingwitheagle.org/t/re-questions-to-ask-your-dr/6073

Obviously her food recommendations can be tweaked to align w/ what you like. Her top two recommendations - wedge pillow & ice packs are a MUST. You should not lie or sleep flat for 2+ weeks post op to help reduce throat swelling. My ES surgeon recommended head elevation of 30Âş which felt like practically sitting up to sleep but it did help my throat & I slept that way for 6 - 8 weeks post op.

Hope your surgery goes well. We’re here for you as you recover!

:hugs:

Hi Dee1976
Just wondering how your surgery went with Dr. Lee. I am in Canada on the west coast and looking for an experienced doctor anywhere in Canada. Would like to know about the procedure and your recovery, etc. Thanks Wayne

Hi Wayne,

We have 2 Canadian members who recently had surgery done in Alberta by Dr. O’Connell - Weezie65 & BFresh. Click on the magnifying glass in the upper right & type their names into the search box & their posts will come up. Dr. McConnel does use the intraoral approach vs. external but both forum members are recovering well. You can also PM a member by clicking on the screen name as it appears above one of their posts.

Thanks again. I haven’t yet spoke with Dr. O’Connell. I am also hoping to contact a Doctor Lee in Newfoundland who apparently has done the procedure. :+1:

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Glad you have a potential lead closer to home. :clap:t4:

Hi @Wayne, I had intraoral syloidectomy and tonsillectomy with Dr. Dan O’Connell in Alberta. I am 11 weeks post-op and feeling really good. Feel free to msg me if you would like more info on my experience.

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