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

  • Pots people , question for all of you
    by Sabrinab on June 12, 2025

    I’ve been town between vascular eagles or pots . Can you explain the symptoms difference like how each one feels ? I really don’t think I have pots but idk cause I’m so drunk like off balance all the time and have had presyncope but it’s not from heat , movement , or typical pots things it’s more from like head movement , I don’t really feel better at all on pots meds either sooooo […]

  • Eagle Syndrome with Glaucoma symptom
    by jobby99 on June 11, 2025

    I am wondering if anyone had the back of their eyes tested with a machine at eye doctor and it basically says you have glaucoma despite being young and having no other risk factors. I read Dr. Hauser put out on his website (patient case studies) that Eagle Syndrome can reduce blood flow to back of eye. I think this is what is happening, which is why the eye doctor was so confused about the […]

  • How long is this?
    by Sabrinab on June 11, 2025

    I used the measurement tool on dicom and lined it up next the measurement scale on dicom . But idk how much it measures to be . Can someone help me ? This is my styloid length on the right green line 5 posts – 3 participants Read full topic

  • Scar and healing
    by Stella1 on June 11, 2025

    Hello I’m planning to have surgery in summer. Can you recommend any treatments for scars? Creams or does even laser therapy help? How much time does the scar need to heal? No sun for a year? I hate this syndrome, plus going thru the hassle of doctors and finally getting surgery I think the cherry top is the scar. Do you have any recommendations for post surgery care ? Did you do both? I only […]

  • My Story so far UK
    by Rosie on June 10, 2025

    Hi everyone, This is my story so far. I have had many symptoms over the last couple of years. Occipital & Trigeminal neuralgia, pain & fullness in left ear, above & below ear & under jawline & neck. Migraines including auras and double vision. Tinnitus including pulsatile. These symptoms seem to have started just after I heard a crack/pop just above my left ear. Seen Neurology […]

  • Post Styloidectomoy and IJV Decompression Update
    by pauld1635 on June 10, 2025

    Hi all, Had my surgery with Dr. Nakaji yesterday and it went well. Had to stay in the hospital overnight. On top of the styloid and part of C1 transverse process he also had to remove a large lymph node, which is probably nothing but always concerning. Honor Health in Scottsdale is where he does his surgeries and he seems to have a great support staff there. Everyone involved whether they were […]

  • Hemifacial Spasms turned out to be Eagles Syndrome
    by babsbr on June 9, 2025

    Hello All, I want to express my extreme gratitude to all who have posted here before me. The information you have provided has helped pave the way for me and others. Just by reading your stories, symptoms, surgery experiences and how you successfully navigated this debilitating ailment has provided me with a blue print to follow as I too deal with these symptoms and seek treatment. Like many it […]

  • Autism and Eagles man it’s freezing in here freezing when you say oh yeah
    by KarenG on June 8, 2025

    We are at the hospital with our non verbal son being gaslighted again. Blaming autism for his behaviors instead of pain. They are totally ignoring his elongated styloids to be the cause of his symptoms. I have very little confidence in the medical professionals at this point. All lab tests are normal so they want him to see a psychiatrist to put him on drugs. I wish I would wake up from this […]

  • Kyle – Surgery on Monday
    by KyleNeedsHelp on June 6, 2025

    So, I’m really not doing well. The anxiety and brainfog are killing me. My brain focuses on guilt and regrets. It spirals over and over. I don’t feel like myself at all. It’s hard when I’m feeling awful not to reflect on my past mistakes, how I could have done things differently and how I could have avoided my neck injury… But I know I can’t change the past. Anyways, I met Dr.Hackman […]

  • Story/journey with symptoms/imaging, 3d, help please
    by JCsea on June 6, 2025

    Hello, As many here, I have been struggling… found this forum through many hours of research and coming across Eagle syndrome. Looking for feedback, insights and your help please. Anything that you may have regarding what’s going on with me would be much appreciated. At the end of January 2025 I experienced a sharp pain in the middle of throat on left side of Adams apple area. Didn’t think […]