Welcome Members!

Welcome to Living with Eagle Community!

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

  • Super belated update!
    by slekeille on September 25, 2023

    Hey y’all. I’m sorry that I dropped off the face of the forum. I know that several of you were worried and reached out to me privately, but I haven’t had the time or energy to update here. I had surgery to place my J-tube in June, and I spent the majority of the summer going to the hospital every 48 hours for IV nutrition. The good news is I am finally running tube feeds at home, as well as […]

  • Newly Diagnosed – How fast does this progress?
    by Megs22 on September 24, 2023

    Hello! First of all, I’m so glad I found this community and appreciate all of you, especially given my ENT didn’t even know much about Eagle Syndrome when he diagnosed me a couple weeks ago. The resources here are wonderful. I have an appt with Dr Hackman at UNC in December so I’m self-managing until then. I have ossified styloid processes and calcified ligaments on both sides. My left side […]

  • Post-op recovery
    by AS2005 on September 23, 2023

    It’s now 11 days post-op and I have a significant downturn today. I’ve developed cold symptoms and a fever, so I spoke to my family doctor’s office. They don’t think it’s related to the surgery wound since the wound is not abnormally painful or swollen. I probably just caught something from my kid. Lots of nerve pain and dizziness, even with pregabalin, which could be from the neck […]

  • 6 yrs 24/7 facial pressure, diziness, ear fullness, painful hands, etc. Does this sound like Eagle’s?
    by borko2100 on September 23, 2023

    My health has never been good, I have suspected having CFS/ME (chronic fatigue syndrome) for a very long time. I had quite a severe worsening back in 2017, I used to think it was just a permanent “crash” that many people with CFS report, but now I am starting to think might be something else. How it started was basically after pushing myself very hard physically for a few days (chopping […]

  • Still here, still with the same swallowing issues, looks like I may have CCI, likely ruptured transverse ligament. Severe Jugular vein compression
    by Callmestar1 on September 21, 2023

    I used to post here a while back. I’m not better. No one has ever really taken my symptoms seriously. Maybe i’m finally getting somewhere now but it seems like one big mess. It looks like I may have CCI/AAI with a ruptured/damaged transverse and alar ligaments at C1/C2. I remain with the swallowing mechanism feeling completely blocked/stuck on the upward swallow movement with it not being […]

  • ASSIRI AHMED, H. et al. (2023) – The prevalence of elongated styloid process in the population of Barcelona: a cross-sectional study & review of literature
    by TheDude on September 21, 2023

    BioMed Central The prevalence of elongated styloid process in the population of Barcelona: a… Background Styloid process (SP) is a cylindrical bony projection that originates from the inferior part of the petrous temporal bone just anteriorly to the stylomastoid foramen. Several nerves, muscles, and ligaments are related closely to the (SP)…. 2 posts – 2 […]

  • BREDA, D. et al. (2023) – Recurrent Syncope Related to Carotid Compression in Eagle Syndrome: A Case Report
    by TheDude on September 21, 2023

    cureus.com Recurrent Syncope Related to Carotid Compression in Eagle Syndrome: A Case… Eagle syndrome is a rare disease characterised by symptoms associated with an elongated styloid process or calcification of the stylohyoid and stylomandibular ligament. Symptoms associated with Eagle Syndrome include orofacial and cervical pain,… 3 posts – 3 participants […]

  • German Dr Heim formerly working in University Hospital Bonn is now medical consultant in Cologne
    by TheDude on September 19, 2023

    Hi friends, Dr Heim formerly practicing in Bonn, Germany published his new web page today: Medizinberatung Heim Medizinberatung Heim – Medizinberatung Heim: Dein Wegweiser zur Gesundheit Medizinberatung Heim – Entdecke eine persönliche Gesundheitsberatung, abgestimmt auf dein Leben Translated in English:Medizinberatung Heim Medizinberatung Heim – Medizinberatung […]

  • Compress IJV almost without Eagle syndrome(basic large transverse process С1 ) in triangle atlas C1 and digastric muscle and Musculus stylohyoideus, TOS and hyoideum bone identify on your own despite doctors’ diagnoses
    by Filatov on September 19, 2023

    I was 14-15 years old, they gave me age-related and psychological diagnoses. As a result, after almost 20 years, I began to study aspects of medicine, the structure of the vascular system, pictures, and figured it out on my own.And I even independently found compression of the IJV in another patient. But he has a straight bone, eagle syndrome. I have segmental calcification and to see it on CT I […]

  • Curve correction
    by Lababila on September 18, 2023

    As many people have military neck, what is the possibility that the cervical pressure caused by military neck is making us symptomatic? Has anyone tried to restore their natural curve? I feel it can only take away tension in the neck and probably reduce tightness and ES symptoms 12 posts – 4 participants Read full topic