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

  • Successful surgeries
    by Millymay on May 21, 2025

    It’s been a year since my left side Eagle Surgery and almost six months since my right side surgery, I am so much better than I was four years ago when my life fell apart, I had to give up my job and had a hard time getting out of bed, my worst symptoms being continuous migraines and disabling vertigo, sleep was little to none. Today I’m migraine free, still get the occasional pressure […]

  • Consult yesterday with Surgeon in Houston
    by NachoEagle on May 21, 2025

    Hello! I am new here- and not very tech savvy so I hope I’m doing this correctly to post. I recently got diagnosed with ES after years of suspecting it myself yet being brushed off by nearly every doctor, ENT and TMJ pain specialist. I kept getting the diagnosis: “TMJ with referred pain to the neck” even though I didn’t have horrible TMJ pain or anything, just neck pain throbbing and […]

  • May 1st surgery
    by TortolaTony on May 21, 2025

    I first contacted Dr. Ryan Osborne in LA and while he confirmed the Eagle’s Syndrome diagnosis, he wasn’t contracted with Medicare and I didn’t have $30,000 for the operation. He suggested I look for a University Hospital. A Scripps ENT, Dr. Brendan Gaylis, examined me and said it is either C1 or the Styloid process but because of the lack of experience, referred me to Dr. Theresa Guo, Head […]

  • Second surgery done
    by Lemontree on May 20, 2025

    Hi all, I’m so happy to share that I’ve now had my second surgery using the TORS robot (intraorall), and the left side is officially done! It will be two weeks tomorrow and I’m healing well. The styloid process on that side was 5cm, my surgeon ended up shaving it down by 2.5cm instead of removing it completely, which I hadn’t expected, but it makes sense to restore it to a normal length […]

  • Had both types of styloidectomies done (2017 – Australia)
    by Raistx on May 17, 2025

    TDLR: was diagnosed with eagle syndrome and had two styloidectomy (both types). Still have pain today. Tip 1) extraoral over intraoral. Tip 2) get a nerve specialist involved. Tip 3) get a second doctor opinion if needed. Background I have a permanent cephalalgia (headache) since 1997. I also have about 80% of eagle syndrome symptoms since 1997 or since. I have a long list of medical […]

  • ES Diagnosis Confirmed – Feeling Lost on How to Move Forward
    by lizla on May 15, 2025

    Hi All, I’m from the Greater Toronto Area in Canada. It’s been a little over a month since the neuro-vascular surgeon confirmed that I have ES with internal jugular vein compression between my right styloid and C2. I’ve needed some time to process how that appointment went. For the past year I thought I had a blood clot blocking my jugular vein and no one could figure out how I got it, so I […]

  • Greetings Friends – New Here
    by wade on May 15, 2025

    Greetings Everyone, My name is Adam Wade, call me Adam or Wade. While I wouldn’t say I’m happy to be posting here (I’m guessing no one is happy about experiencing chronic conditions), but I am grateful to be amongst so many kind and caring people. I signed up a few days ago and I’ve been reading through a lot of the information here. A little about me: I live in San Francisco bay area; my […]

  • Advice moving forward with Dr. Nakaji
    by Kit_Cat on May 14, 2025

    I had had some semi-confusing correspondence with Dr. Nakaji’s office prior to this, and I’m wondering how you all feel I should move forward? I received this email about 1.5-2 weeks ago and it’s in regard to scheduling a consultation. I already have an appointment with Dr. Hepworth in June, although I’d like a second opinion. Im wondering if I should try to get in contact with their gap […]

  • 3D rendering
    by Giamiacar on May 8, 2025

    10 posts – 5 participants Read full topic

  • Panorama
    by Giamiacar on May 8, 2025

    Hi everyone, I’m new here and I am finally getting answers after years of suffering with pulsatile tinnitus, flushing, flares, tinnitus that is spreading to my right ear and getting worse. I’m having eye issues which no one can explain, anxiety, and a choking feeling. Dry mouth and burning, vertigo, horrible brain fog and chest pain. I’m posting my pan which isn’t the best, but my […]