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

  • Symptoms worse during period/menstruation – anyone else?
    by Charly on January 21, 2025

    Hi guys! First post on here (I have been browsing the site for a couple of months now without posting). I’m sure I will have more to come at some point. My questions is – for anyone who gets their period/menstruates, have you noticed your symptoms/pain/pressure is worse at this time of month compared to normal? I have my baseline of pain/pressure but I’m just finishing my period and during it […]

  • Question about vascular ES symptoms and diagnosis
    by ClearSky on January 20, 2025

    Hello everyone! It’s nice to e-meet you. I’ve been lurking for a while, reading the messages and seeing how helpful this community is, and I was hoping to ask for help too if that’s ok. As with probably everyone here, I have a complex back story in terms of health – I was hoping to briefly summarise it and ask some questions. So… Background Early 40s / F / based in the UK Mentally […]

  • New Eagle Syndrome Diagnosis – happy to find community!
    by Pamela on January 20, 2025

    Hi, I was diagnosed with Eagle Syndrome last week by Dr Bolognese at Mt Sinai. I originally sent him my scans because my doctor at Mayo thought I have CCI (which it appears I do, along with tethered cord and IIH). A bit of my story: I contracted COVID-19 in Dec 2020 and subsequently developed a very disabling case of long COVID. Prior to this I was very healthy, fit, and had a great career as a […]

  • New, Scared, & Ready to Learn
    by John-Wayne on January 19, 2025

    Hey guys, very new to this group, and to Eagles Syndrome. If you take time to read this and comment, thank you. *August 2023 brachioplexopathy on left side (landed on outstretched arm diving for a volleyball) *February 2024; rotator cuff, labrum, bicep tendon surgery on leftshoulder *July 2024; rotator cuff, labrum, bicep tendon on right shoulder *December 2024; neck pain *January 2025; numbness […]

  • Loosing the plot
    by Adele007 on January 19, 2025

    Hi its adele here, i have 1 day left until i get my results but this last week has been a killer 1.a couple of days ago i thought i could feel a thin bone in my throat then thought it had all broken up and it was going under my chin and on my oesophagus but now im feeling like my oesophagus is slowly moving down from the top where it meets my throat then today i feel like someone is strangling […]

  • Post-op recovery time for C1 shave/styloidectomy?
    by jsisto on January 16, 2025

    After a C1 shave/styloidectomy, what is a reasonable amount of time before you got back to work if you are working? One surgeon said 4 weeks which seems really sooner for recovery, but maybe people are really back to work that soon? What was your experience? 7 posts – 5 participants Read full topic

  • OSUKI et al. (2025) – Internal carotid artery dissection leading to occlusion in a patient with nonelongated styloid process: illustrative case
    by TheDude on January 16, 2025

    caselessons – 13 Jan 25 Internal carotid artery dissection leading to occlusion in a patient with… BACKGROUND Eagle syndrome is characterized by an elongated styloid process causing mechanical stress on the internal carotid artery (ICA). The authors present the case of a patient who had cervical ICA dissection with a nonelongated styloid process…. […]

  • Anyone have surgery with Dr. Dewan? Did hyoid reduction help ES?
    by LittleBird on January 15, 2025

    Hello! I have bilateral elongated styloids and calcified ligaments. I just did a consultation with Dr. Dewan to check into hyoid bone syndrome and she mentioned my hyoid bone is very close to my neck. She suggested doing surgery to reduce the hyoid and detach the calcified styloids in the process. She also mentioned that I could possibly get steroid and Botox injections to help instead of […]

  • Hello! Toadall Newb questions
    by Tamasaurus on January 14, 2025

    Hi there, I’m new here, so I have a few questions because I have never before considered that I could have ES or internal jugular vein compression. I tried reading around a bit for answers but I couldn’t find some info., so thought I might ask? Unfortunately it’s looking like more of a novel than I meant for it to be… sorry I’m kinda verbose The internet has some standard symptoms […]

  • Two different diagnosis
    by ShelbyH on January 10, 2025

    So the past year has been one of the most difficult years of my life. I went to see my dentist she proceeded to yank and yank a crown off for over 45 min. I left and no longer could swallow correctly. For almost a year I felt like someone was strangling me had a popping noise coming from my hyoid bone and then one side of my jaw was very swollen. Finally a dr seen my hyoid bone was pushing up […]