Finding support for Eagle Syndrome? Connect with people like you.

Welcome to Living with Eagle Community!

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

  • IJV compression at C1 level and second thoughts
    by vdm on March 29, 2024

    Folks. I’m on the verge about becoming partially sceptical about the compressed IJV at C1 theory. Not in general, but for certain cases. Logically thinking, if the area/flow capacity of the compressed IJV at the C1 level is not as bad as to make it narrower than the most narrow “bottleneck” (jugular foramen), then it shouldn’t impact the venous outflow that much EXCEPT in cases when it […]

  • Hyoid Bone Syndrome + Chhetri Appt
    by etherealcataclysms on March 28, 2024

    Hey ya’ll, It’s been a while and I’ve been quiet in here. I’ve found out a few things over the last couple months. I don’t have ES- although my styloids are longish. They don’t seem to be pushing on any arteries or my spine, although no one can see if they are pushing on nerves or course. I’ve discovered my pain is actually coming from my neck, more specifically, my hyoid bone. I […]

  • C1 resections – Surgeons in US and Canada?
    by Reemz on March 28, 2024

    Hello, new here. Is there a list of specialists doing C1 resections in the US and Canada , or elsewhere in the world? Is it possible that compression from C1 process may be the cause of internal jugular vein compression? Thank you 4 posts – 3 participants Read full topic

  • TMJ post surgery
    by elijah on March 28, 2024

    Hi everyone, It’s me again. I had yet another follow-up with Dr Hackman and Botox injections, and he thinks the surgery may have unmasked an underlying TMJ issue which is why I am still having pain in the TMJ surgical sites. Just so it’s clear, I have no regrets and the surgery saved my life. I’m forever thankful to Dr Hackman and he’s doing everything he can to help me. The issue is, I […]

  • 3 Weeks post surgery & seeming like a success!
    by MsBearshark on March 27, 2024

    I had my second styloidectomy and decompression of my jugular vein 3 weeks ago. It took a couple weeks for the swelling to go down, but as of about 5 days ago, I haven’t experienced any head pressure, heart rate spikes, or light headedness and have only had very mild headaches. I’m now able to move, bend over, hike, lift things, lay down, use my muscles and let my heart rate rise without […]

  • New symptom after surgery
    by Callmestar1 on March 26, 2024

    Hi all, I had surgery 2.5 weeks ago, not on my styloids but to resection the hyoid bone/trim both back ends and trim down the thyroid cartilage horns. The recovery has been fine/easy mostly, although my swallowing symptoms which the surgery was for, haven’t really improved. I won’t go into too much detail on that as I don’t think the surgery was a failure and don’t want to put people off, […]

  • Consult Today, Very Confused
    by Simply on March 25, 2024

    I saw Dr. Annino today. He said based on my CT scan w/ contrast from 2020, my styloids appeared normal length but that the lower portion of the stylohyoid ligament was calcified on each side. He said calcification of only the lower part of the stylohyoid ligament would not cause my symptoms, it would cause symptoms if was higher up to the styloid process. He is reviewing a more recent CT scan I […]

  • CCI best treatment options?
    by mist on March 25, 2024

    Anyone here diagnosed with CCI who had any sort of treatment done to the injured ligaments? At the moment I’m thinking of PRP injections though my doctor is only able to do these on the back of the neck. Since my problematic ligament is the alar ligament, there are only a few specialists in the world who do the injections through throat (to be able to directly inject into alar or transverse […]

  • Styloid removal and VES stories?
    by danielleg on March 25, 2024

    Anyone who had JUST styloid removed for VES willing to share their story? 7 posts – 5 participants Read full topic

  • Decision at 3 months post surgery
    by Thans on March 24, 2024

    I’m tossing around the idea of not getting my other side done. My Dr said at the 3 month mark it’s time to evaluate. I’m wondering if folks could read my CT results from November (pre-right side surgery) and weigh in. It actually reads that my left side is worse on paper. Length measured around 3.6 bilaterally. They look very fat and bent. CT Results: There is ossification of the stylohyoid […]