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

  • Interesting article – IJV compression not always pathological / symptomatic. How to determine if it is?
    by borko2100 on May 18, 2024

    Found this article: neuroangio.org Jugular Compression C1 Lateral Mass Resection and Styloidectomy | neuroangio.org neuroangio.org – Your new neuroangio source In the article the author writes: NOTE that there is almost always some degree of compression there (C1 / styloid area) — and nearly always asymptomatic. Below is a […]

  • Question re post surgery results…
    by BabzieAM on May 18, 2024

    Question for those who’ve had one styloid out please… My worst symptoms are derealization (24/7 never stops) tinnitus (loud high pitched noise plus loud humming – it gives me earache) and visual issues (double vision, trouble focusing & visual snow). I have others, pain, dizziness, balance issues, numbness in arms. I believe I may have some IJV compression and possible mild IIH. I do […]

  • Help w images/chiari?
    by Eli on May 17, 2024

    dr mentioned on notes 1-2 mm chiari . report says “no chiari” /unable to reach dr anyone familiar that might be able to help if I post pic or send it through personal message? Thank you 7 posts – 4 participants Read full topic

  • New here and looking for guidance
    by KittyKaye1214 on May 16, 2024

    Hi y’all, I’m Kaye and I’m new here. I haven’t been officially diagnosed yet, however I was lead here by another support group who said my symptoms sounded a lot like ES. This all started back in early November of 2023. I have very bad neck and occipital pain that wraps up right behind my left eye. I have intermittent tinnitus and fullness in my left ear and an increased number of […]

  • Images Update from Dr. C
    by Donoel on May 15, 2024

    Hi all, I finally got my images back of my 3DCT. The radiologist noted bilateral ossification of the stylohyoid ligaments but did not say anything else. Images are below. 8 posts – 3 participants Read full topic

  • Thought it was time to post my story…
    by a_catindisguise on May 15, 2024

    Hey you all! Wanted to start off by saying I really appreciate this group so much! When I started having symptoms, Eagles was the only thing that matched to a T. I had a follow up with my 2nd ENT this afternoon to go over my CT with contrast and I’ve officially been ruled out of every possible ENT condition including ES. My story is kind of interesting though and I’m hoping maybe it can help […]

  • Preparing for styloidectomy
    by Jacqui on May 14, 2024

    I have right sided styloidectomy booked for 31st May with Mr Hughes. To say I am nervous is an understatement! Can anyone please offer tips on what I will need to help me in the recovery period? Some specific things I’m concerned about… I have mcas (mast cell activation syndrome) so would like to avoid steroids if possible. Is this a bad idea? Will I be able to eat afterwards? What about […]

  • Dr Bargiel and his technique (MICS) – surgery in under 10 minutes!
    by mist on May 14, 2024

    Here’s a video from removing styloid by Dr Bargiel from Poland. The styloid process was removed in just a 5 minutes Eagle Syndrome – Minimally Invasive Cervical Styloidectomy (MICS) 5 posts – 3 participants Read full topic

  • Symptom Confusion, first ENT appointment unhelpful
    by SamH on May 14, 2024

    Hi Guys, recently diagnosed with ES after unusual symptoms Doctors couldn’t link together and CT scan. Symptoms I’ve recently had pop up in the last 4 months (kind of in chronological order): Started with noticing some pain directly under left ear and behind jaw bone, no pain unless pressure applied (mainly noticed when edge of pillow was pushing into that area) Left arm nerve pain […]

  • Newbie here, can someone take a look at my scans?
    by a_catindisguise on May 13, 2024

    I finally got my CT images with contrast back- report says no indication of Eagles. My symptoms match exactly though. Can someone with more experience look at my images and tell me if you can see anything abnormal? I am feeling very defeated and like I am back at square 1 trying to figure out what’s causing my throat to click when I swallow and the shooting nerve pain in my face I am going to […]