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Eagle Syndrome - Online Support Group

New here from Newfoundland Canada

Hi,
First of all thank you for accepting me to this group, so glad I found it.

My name is Deanne, I am a 43 year old female from Newfoundland, Canada. For most of my life I’ve had frequent bad neck pain, shooting jaw pains like little electric shocks going through your face, bad ear pains which were never an infection, sometimes it feels like my throat is closing in or like something is lodged in there, even though there isnt. Then there are the migraines I get which always come with the jaw/face pains, they take me out for days at a time, it has always been treated as migraine/cluster headaches. For my chronic c neck pain I’ve seen massage therapists, chiropractors, physiotherapists and nothing has helped, so I just gave up and refered to it as my bad neck and suicide headaches. But yesterday it was my dentist who told me why all this was happening…for years !

Yesterday I went to a new dentist(we switched because we needed a closer dentist). So being there for my first visit, they wanted do xrays to get a good look at my teeth, which most dentist do on first visits. So we discussed the x-rays and I decided to have panoramic x-rays, so the doc could have a real good look at my teeth. So after she looks at the x-ray she says, "You’re teeth are perfect, but were you aware you have Eagle Syndrome? and she pointed it out to me on the x-ray and told me a little about it, but not nearly enough.

I’ve never even heard of this until she said it. I have an appointment to see my family doctor July 18, the dentist is sending the panoramic x-ray to him.

I’ve just been googling information on this, and Iam still so lost. Is it rare, genetic, should my son be checked? Is it dangerous? If it come to surgery, how long is hospital stay, how long before I can return to work ?

I am looking for any information on any doctors who do surgery for this in Newfoundland ?

Please feel free to feed me full of information. So lost, confused and a little scared of the unknown right now.

TIA Everybody :slight_smile:
Deanne

Hi Dee & welcome to the site!
I just messaged you with info about the site before I saw your discussion, so you’ll get this in duplicate!
We have a list of doctors familiar with ES in the Doctors Info section - the latest one is Doctors Familiar With Eagles Other Countries 2019. There’s names of a couple in Newfoundland, hopefully you can find out more as some of the names were given by members a few years back & not sure who had surgery with them, but it’s a starting point! Some menbers see ENTs, but lots of menbers have had successful surgeries with Skull Base surgeons / Otolaryngologists, & also Head & Neck cancer surgeons, & head & neck neurovascular surgeons. Unfortunately as ES is quite rare, lots of doctors are unaware of it & unwilling to do surgery do if you can it might be an idea to ring their office ahead to check if they treat it.
There are treatments for ES like nerve pain medications & lidocaine/ steroid injections into the area which can help with symptoms, but there is no cure for ES other than surgery I’m afraid. Surgery can be external or intra-oral - external is less likely to cause infections & also the surgeon can see more & remove more of the styloid process. Ideally with surgery as much as possible should be removed. And as well as the styloid processes being elongated & causing symptoms, the stylohyoid ligaments can get calcified & cause symptoms, so you would need to check that with the doctor.
As for recovery, it does vary depending on the surgical techniques- some members have been back to work if it’s a desk job in a couple of weeks, others take longer. I felt lots better after 3 weeks- it was uncomfortable to turn my head to drive safely before that. There’s lots of posts by members about recovery, you can search for what to expect post-surgery & get lots of info. The surgery can be done in a day, or sometimes you can be kept in overnight, the op itself is a couple of hours.
No-one knows if it’s genetic, but there have been a few members who’ve had relatives with it too. Technically ES is when elongated styloids or calcified ligaments cause symptoms, so if your son doesn’t have any, then no need for him to have an xray or CT. In extremely rare cases ES has caused strokes if the arteries get compressed- there’s info in the Newbies Guide about it, but it is very, very rare, so try not to worry about that.
Hope that you can get some treatment soon!

Hi!! I’m from Alberta and it’s crazy, but my whole story/diagnosis is just like yours!!

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.