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, 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

  • Nerves compressed by eagles
    by JoJomoo on April 15, 2024

    Hi everyone May i ask what are the nerves that can be compressed by Eagles and is the accessory nerve one of them? Thank you lots. 4 posts – 2 participants Read full topic

  • After jugular vein compression surgery, still having problems
    by ChristinaBabylon on April 15, 2024

    Hi everybody, I’m contacting you because I need some desperate advice for my husband. We come from Belgium and our native language is French. I’m sorry in advance if my English is simple. Thank goodness for automatic translators For the story : My husband (33 years old) suffers for many years (+/-15 years) from problems with his eyes (blurred vision, intermittent diplopia,hyper convergence, […]

  • New here, many symptoms, diagnosed with CCI and probably some jugular vein involvement
    by komok on April 15, 2024

    Hey, I’ve been reading on this great platform for some time now, and today I want to share a bit about my symptoms, the imaging I’ve already undergone, and so on. I’m 22 years old and from Germany, and I’ve been experiencing various symptoms to some extent for probably over a decade. I attribute some of the symptoms to CCI, which I was recently diagnosed with, some to a cerebral outflow […]

  • Possible IJV Compression
    by BabzieAM on April 13, 2024

    Hi, I am curious to know whether anyone else is struggling with similar symptoms and whether they could relate to IJV compression. Derealization – everything looks unreal/distant/dreamlike/tunnel vision Visual snow – flickering light/fuzzy static Double/blurred vision- even though eye tests clear Dizziness like a rocking boat and sometimes blacking out (everything goes white, but don’t realise […]

  • Honest opinions needed
    by JoJomoo on April 12, 2024

    Hi im so grateful to everyone here who has helped me. It has only been a week since i was told eagles was suspected and i am on the nhs wait list. I wanted to ask a question without sounding too miserable…im really struggling with ear pain and all kinds of horrid symptoms but eye pain is really bad and i wanted to ask how people coped for so long with their symptoms and if they suffered […]

  • Surgery with Hepworth coming up in early May
    by akc on April 12, 2024

    It’s been way too long since I updated here. I continuously struggle with balancing increasing pain and muscle spasms that go all the way up to my neck (no good!) from thoracic outlet syndrome from typing and scrolling with researching and keeping up with this and the Facebook group. It’s a no win situation My surgery is in just under one month with Dr Hepworth. I did the catheter angio […]

  • Anxiety drug pregabalin linked to rising number of deaths – here’s what you should know
    by TheDude on April 11, 2024

    Hi friends, Just want to give you important information on Pregabalin (Lyrica) and Gabapentin, I came across recently. Those had also been recommended to me for ES pain earlier. The Conversation Anxiety drug pregabalin linked to rising number of deaths – here’s what you… Pregabalin is prescribed for a number of conditions – including epilepsy, anxiety and […]

  • Birth trauma causing vascular outflow obstruction
    by IvdM on April 11, 2024

    Hello all and thank you for the warm welcome Isaiah! I would like to post my story here hoping it will help others while also getting your opinions on what I missed/ should look into. I am a 25 year old male from the Netherlands. During my birth I was stuck at one shoulder while my heart rate dropped quickly. This meant they had to get me out asap so they used various tools on my head and neck […]

  • Hi does eagles affect the trigeminal nerve and all its branches?
    by JoJomoo on April 10, 2024

    Hi Sorry for all the questions. Does eagles affect tge trigeminal nerve and all its branches? Many thanks 10 posts – 6 participants Read full topic

  • Thick salivation/acid reflux?
    by Eli on April 10, 2024

    hi everyone . i havent had surgery still figuring all this out , do have calcified ligaments .Have you experienced constant thick salivation almost to the point where i have to have a cup next to me to spit it out ( gross sorry) ?i had some gi issues a while back since a dr dilated mew no real reason for last july , found that had h pylori erradicated w nasty antibiotics. second endoscopy last […]