Finding support for Eagle Syndrome? Connect with people like you.

A welcome banner for Living With Eagle Syndrome community featuring a hopeful patient and caregiver

Living with Eagle is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Eagle Syndrome is elongation of the styloid process which is actually calcification of the stylohyoid ligament. The s-h ligament runs from the tip of the styloid processes to the lesser horns of the hyoid bone. The hyoid bone also has two greater horns. Hyoid bone syndrome arises from the greater horns becoming elongated or thickening such that the hyoid bone loses some of it’s movement & begins to press on some of the same nerves that elongated styloid and / or calcified s-h ligaments irritate.

The hyoid bone can also become “tethered” by calcified stylohyoid ligaments. Under normal conditions it moves freely up and down and a little side to side when we swallow, talk, laugh, cough, sneeze, breathe, etc. When it loses the ability to move as it needs to, pain results.

This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

 

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join. 

Latest Discussions

  • Feedback on Joshua Shindler in Oregon
    by Trisha on June 19, 2025

    Hi friends, has anyone had a positive outcome surgery with Dr Joshua Shindler in Oregon? Any info would be greatly appreciated 6 posts – 3 participants Read full topic

  • Post op supplies?
    by Deemarie on June 19, 2025

    So i have tried to search to find maybe a list of important things after surgery to have and im not really finding post on it. If someone knows of one please let me know… but i will be traveling out of state for surgery and putting together my “packing list” i have a pre made bag which has the normal, but since this isnt a normal trip i am looking for suggestions of what maybe helpful to […]

  • Surgery Doctor Recommendations
    by Bmmac on June 19, 2025

    Have been diagnosed with Venoous congestion with styloids and IJV compression. C1-C2 transverse process also an issue. Would like to see Dr. Hepworth but wondering about Cognetti and Constantino? I was high speed rear end MVA with left side airbag hit 6 posts – 3 participants Read full topic

  • Suspicion of eagle syndrome
    by Picker99 on June 19, 2025

    Hi everyone, Im happy that this community exist and I found it, Ive read many peoples posts which their symptoms sounds absolutely terrifying, and I feel sorry that the doctors werent recognizing the debilitating eagle syndrome and its associated syndromes/symptoms because I have also been on the search/ the same journey of seeking answer and help. And thank you Isaiah for welcoming me into the […]

  • Imagining question and neuro symptom question
    by AugustWest94 on June 16, 2025

    Good morning all – I hope all the Fathers out there had a great day yesterday. I wanted to reach out with two questions. First, I wanted to see if anyone else has experienced neuro symptoms that have been explained by Eagle, and if so, if surgery took care of those. I’ve noticed that over the past few years I’ve been a bit more clumsy than normal, with brain fog/fatigue. I started having […]

  • Bad Week – Any advice for symptoms?
    by Benwt on June 16, 2025

    Hey everyone. Having a particularly bad week, getting sharp pain in my base of skull with the slightest movement of my head, sitting at my desk just feels like stabbing in the base of my skull which is making my slouch and causing back pain. Anyone in good tips to manage this? I had Botox injections for cervical Dystonia about 4 weeks ago and think it’s making it worse (battle between my […]

  • Doctors around CT
    by Dancingpineapple on June 15, 2025

    Anyone have any experience with Dr. Mohamed Khaled? I’ve seen in the pinned docs post he’s the only one really in CT, I’ve also heard of Dr. Constantino but I don’t think he takes my insurance. I still haven’t gotten an official diagnosis but I think a lot of my symptoms align with ES. Just really looking for someone so I can get my foot in the door. 5 posts – 4 […]

  • New here,
    by Dancingpineapple on June 15, 2025

    Hello everyone, not the way I would’ve liked to meet all of you lol but here’s a quick backstory, I’m 24 years old, was training as an mma fighter (not sure if maybe trauma from neck or getting punched in jaw caused some calcification). First symptoms were a back spasm followed by a massive headache that wouldn’t let up(started oct.2024). Weeks straight with the headache, a few er visits […]

  • Strongly Believe I’m Experiencing ES
    by AugustWest94 on June 14, 2025

    Good morning all – I hope everyone is well. Before I start my story here I’ll let you know all the symptoms I’m dealing with as of June ‘25: Crazy ear pressure that is relieved for a split second when I jerk my jaw around. The relief is more pronounced when I simultaneously move the jaw and pull my fingers downward on the area right below/behind my ear lobe (where I now know the styloid […]

  • Removal to Skull Base vs Shortening Styloids
    by NBAKER on June 13, 2025

    I met with Dr. Costantino from New York this week and he said he shortens the styloids to normal length, about 2cm. Dr. Osborne from LA removes it as close to the base of the skull as possible. Is there a difference for symptom relief in the two processes? 8 posts – 3 participants Read full topic