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

  • Is a catheter venogram required before styloidectomy and C1 shave?
    by jsisto on October 15, 2024

    Hi all, I have very apparent IJ compression between by styloid process and C1 (right > left). My surgeon was comfortable proceeding without an invasive catheter angiogram/venogram, but I am not sure if I should absolutely proceed with the catheter venogram before surgery. I am scheduled with a consult with Patsalides next week to discuss. How did you decide on proceeding with the catheter […]

  • Developing Symptoms, difficulty getting diagnosed
    by SamH on October 15, 2024

    Earlier this year I developed a number of unusual symptoms, pain under ear continuing down neck into clavical, pec pain, jaw pain etc. I also had some arm numbness and discomfort and burnt tongue sensation. I had a CT which revealed elongated styloids both sides, 6.3 and 6.8cm long (CT image attached) I had an appointment with Dr Michael Elliot in Sydney NSW. I think I made the mistake of […]

  • Symptoms have resolved 80% after leaving toxic mold!
    by Rlr286 on October 15, 2024

    Hello! I wanted to provide an update about a surprising turn of events. Last month, I found a TON of black mold (stachybotrys, aspergillosis, and penicillium) in the home I’ve been living in for the past 2+ years. The picture is in the basement of the house, and is only a portion of the mold that was found. Some background: I’ve been diagnosed with IJV compression/venous outflow […]

  • CT imaging help
    by Cdbruce on October 14, 2024

    Hello, Can someone help me view my CTs I have a disk I need to view. What are the softwares I need to download to view a 3d rendering for free. Thank you 4 posts – 4 participants Read full topic

  • Scottish Issues
    by Pollytwix on October 14, 2024

    Hi there, Been a member for around 8 years after being diagnosed with Eagles after continual falls and minor blackouts. Struggled to get anywhere with old GP he retired finally and a new one refered me to ENT, they did a load of tests biopsies etc and decided yes all my symptoms are linked to Eagles. Using information gained on here got them to refer me to Mr Currie in Crosshouse, Kilmarnock. […]

  • CT 3D rendering and backstory – advice appreciated
    by Valeriet7426 on October 14, 2024

    I have attached the 3D renderings from my husband’s CT scan. All thoughts and comments are welcome and most appreciated. I am especially confused looking at the veins and potential compression. I can upload more photos if there are angles missing that would be useful. Some background The radiologist reported the right side at 6cm and the left at 5cm. The hyoid bone was reported as normal. […]

  • FIESTA MRI Information
    by JugularEagle on October 11, 2024

    Extreme and unbearable symptoms two months after surgery If you’re able to get a FIESTA MRI of your vagus nerve to look for damage or compression of it, that could be helpful I am still trying to understand what I need to do to push for this Fiesta MRI. I asked for it with the ENT months ago and they didnt even know what I was talking about. I know it is called different things depending on […]

  • Does stress or nervousness make your sore throat pain worse (or other symptoms)if you have Eagles syndrome?
    by nancyh on October 10, 2024

    Whenever I am stressed out or having social anxiety, my throat hurts a lot more. I’ve been identified with Eagles syndrome and I’m trying to decide if I should do the surgery or not. It’s a dull pain / very tender all the time but gets worse with anxiety. I am new to this group and would appreciate all comments. Thank you so much. 6 posts – 4 participants Read full […]

  • How long do you give IJV to open up?
    by JSwing on October 10, 2024

    How long do you give IJV to open up post op before you call it? Like it’s not going to happen. 2 posts – 2 participants Read full topic

  • Ok to start blood thinner again after decompression
    by JSwing on October 10, 2024

    I’m 8 days post op left decompression with Hepworth. Struggling with all the symptoms. I have a telehealth with him tomorrow. Wonder if steroids would help, but I also have blood thinners at home and wondered if that would help get me through? Bad idea or worth a shot? 5 posts – 3 participants Read full topic