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Eagle Syndrome - Online Support Group

Who knew it was Eagle’s Syndrome

Hello everyone. I’ve

That didn’t work. Let me try this again.

Hello everyone. I just received the news today and finally have the answer to why I’ve had 5.5 years of never ending pain. Like many of you, I’ve had every test, seen so many specialists and nobody ever suggested that Eagle’s Syndrome was a possibility.

2 weeks ago at work, I was speaking to a patient (I work in health care) and she mentioned Eagle’s Syndrome. I googled it, looked at the symptoms and thought, “That sounds like what I have”. I had a CT with contrast on Thursday and the results came in today. Elongated styloids on both sides, the right worse than the left, with compression of the jugular veins. Based on the very helpful readings I have done, I think this means I have Vascular ES. Would that explain why I have had a headache 24/7 for over five years?

To be honest, part of me did a happy dance (Finally realizing that I am not crazy - and boo on you doctor who told me that I was very intense and maybe I needed to go for more walks to help my headache). The other part of me cried. I can’t believe I finally have an answer and a possible solutions.

A little bit of background info: I’m a trained physical therapist (although I don’t treat patients anymore, I still work in the medical field). I am married to a wonderful chiropractor. I have endless neck, throat muscle and TMJ treatment from so many health care professionals, and other than brief episodes of some decreased symptoms, the pain in my head/jaw/teeth/face and lump in my throat is always there. If that doctor wants to know why I came across as intense, maybe the 24/7 pain with no medical doctor looking for the real cause is a good reason for a little intensity.

So here I am. Coming to all of you for help.

I live in Toronto, Canada. My readings of your posts suggests that there is nobody in Toronto who will do the surgery. So what should I do as my next step… Do I run from ENT to ENT trying to find one who can help? How can I find a surgeon here who has done this surgery many times? If all else fails, should I drain my savings account, fly to the US and see Dr. Cognetti or Dr. Samji?

I am very excited to hear any suggestions any of you have and I thank you for reading my post.

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Hi, welcome!! And congratulations! It only gets better from here…you are on the road to recovery - even if you’re at mile 1. You’re on your way! I’m so happy when people get their diagnosis. I’m 6 weeks post op (operation was a HUGE success) so a big hug and hooray for having proof that there IS a reason you feel what you feel!! Now to choose a surgeon, that is the next step. Just know we appreciate your happy cry and intensity. You’ve basically described all of our own emotions :slight_smile::heart::rainbow:. Welcome! We’re with you all the way!

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Thank you SewMomma. I’m so happy for you that you’re feeling so much better. Congrats to you!! Gives me so much hope. I really appreciate your reply and good wishes. This has been a crazy road and it feels so good to know that there are others who totally get how crappy one feels from this silly syndrome. I have wonderful friends and family but nobody who can truly appreciate having constant head and face pain. Thank you again.

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Hi & welcome!
It is a mixed reaction to an ES diagnosis- pleased at last that you have an answer to your symptoms, but thena realisation that it’s not an easy fix! You’re not alone in being fobbed off- lots of us here have had the same!
We have a list of doctors familiar with ES in the Doctors Info section, but you’re right- there’s very few in Canada I’m afraid. Rather than an ENT you could look for a Skull Base surgeon/ Otolaryngologist as they operate in the area of the styloids, hopefully you can find someone in Toronto? Otherwise if you do decide to seek help in the US, the doctors do phone consults which would save you one trip at least…there’s been discussions about this with what info to send- if you search for CT protocol you’ll find it.
I had bilateral compression of the jugular veins too, I had surgery both sides, & feel tons better now- I’m UK so it took a few years…I hope you’re able to get help soon.

Thank you, @Jules for your reply and support. Do you know if the compression on the jugular is the case of the headaches or is there likely compression of some other structures?

It can definitely cause headaches, as the pressure in the brain can increase (Intracranial Hypertension). If you google symptoms for IH you can see that headaches, dizziness, ear pressure, brain fog etc. are common symptoms.
I found sleeping half upright helped me with headaches, but yours sound worse than mine.
But lots of other members have headaches with ES, so IH isn’t the only cause.

Hold on to the hope that surgery will knock out as MANY symptoms as possible and if some are still left, my guess is that they’ll be so minor compared to what all you’re dealing with now. :blush:

Thank you, Jules. I’m going try the half upright tonight. You’re advice is so helpful.

SewMomma you provide great support.

I’m getting old (47) and can live with some neck pain etc. It comes with the whole aging thing. The part that I cannot deal with is the constant headache. It’s exhausting. Like you, I have kids and given our Canadian past time, I’m running from one hockey arena to the next. Sitting in a freezing cold arena, watching game after game, with the feelings like I might need to rip up off my head has been tons of fun.

Enough complaining. If there is anything I have learned following this board the past few weeks is that many of you have had great results from your surgeries and I finally have hope.

PS. Sorry for all the posts and complaining. This is the first time in 5 years I get to truly vent and I feels so good!

Girl, you post away!!! This site was my lifeline last fall. Still is. I’m hoping to get the second side done this summer. I CRINGE at the thought of added discomfort during your suffering, A cold hockey arena - yikes!!! I spent last fall indoors, my husband took the kids to golf and soccer. I was hanging by a thread in my robe eating mashed potatoes. I feel so much better now I’m looking into taking a spin class at our YMCA. “Who knew” I’d be up for that! I had a click when I swallowed that slowly chipped away at my mental health. It is now ancient history! The second side clicks about every 3rd or 4th time I swallow but it’s amazing how calm about it I am now because I’m on the other side of surgery. I know the second click will be gone as soon as I wake up next time around. I know the truth that calcified ligaments and elongated styloids can mess with us in ways that make us say things like “I want a new body”. That was me last fall so, “ripping your head off” - I keep a journal of my feelings and I wrote something just like that last fall. I don’t feel like that any more.
The travel/money issue is a big one. My husband has good insurance and the hospital, surgeon, anesthesia and pathology in Atlanta just billed. They “charged” about $25,000 but we pay have to pay a very small portion of that. I thought you might want to know that. I’m sure each hospital is different and if you had to self-pay they would give you a big discount. But, let’s not go there. Let’s hope you can find a Canadian doc, eh? :wink:
I am 43 and also was willing to accept some aches and pains but this is different. Something is anatomically off in your body and you need it fixed. Ironically there is a Canadian doctor working as a “fellow” at Emory right now in the otolaryngology department. He is from Edmonton. Would you like his name and maybe he might know someone? Hey, it’s worth a try! I stopped at nothing to find a surgeon, lol! Private message me if you want more info. You’re on your way - just promise you will constantly update us. We get attached to our ES buddies here :heart:

SewMomma. I’m technologically inept. How do I private message you?

Lol I’ll message you :sunglasses:

Now I’m paranoid if I did it right! Do you see a message in your mail? Up by your name at the top right you should be able to click on an envelope. Everyone, please excuse two middle-aged women here while we figure this out! Ha ha!!!

SewMomma!!! I’ve been locked out since I got your message for posting too much today. Seriously people! I finally find help and you’re locking me out for the day because I post too much. I got my diagnosis yesterday. Give a girl a break. I need to chat with SewMomma!!!

Come ON universe!!! :joy::joy::joy::joy:

Headcase,
I don’t think the site locks people out. That’s the first I’ve heard of that. I’ve posted tons on here in a day & never had a problem. I’ll contact ModSupport to see what they know.

In order to privately email someone, you just click on their name as it appears at the top of the post i.e. click on SewMomma at the top of one her posts. A box will appear w/ their name & other info in it & at the top right is a blue bar w/ an envelope on the left side followed by the word “Message”. If you click on the blue bar it opens a window where you type an email to that person but it can only be read by the recipient. It won’t be posted on the forum.

I’ve had a message saying I’ve posted too much but not got blocked, hope this gets resolved!

I spoke to Mod Support. If you’re a new member and you post too many messages on one day, the system will lock you out for an hour. This is to prevent spamming.

I found out the same thing. Glad you got a quick reply from ModSupport!