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

  • Dr Stepan in Chicago
    by Eli on March 18, 2024

    Has anyone seen Dr Stepan at Northwestern in Chicago and do you have any feedback?OR really any other dr in Chicago? thanks in advance 1 post – 1 participant Read full topic

  • Doctor Questionnaire
    by metzgem on March 18, 2024

    Hi there – our 18 year old son has been diagnosed with ES – he also is hypermobile. We are now beginning the process of meeting with doctors to discuss the treatment options/surgery. The doctors we are most interested in ( Dr. Hepworth, Dr. Costantino) we can’t see until later this spring/summer. However we are meeting with some local doctors that were recommended by our specialist to begin […]

  • Long delayed post-op (Doctor Hackman) update
    by slekeille on March 18, 2024

    Hey y’all. I am so sorry I haven’t posted an update since a few days after my surgery back on January 8th. I have been dealing with healing, over here! =) Healing, however, is going well – while not at all linear. After spending a week in a hotel in RDU with my mom post-op, I came home to spend a week with my sibling (whom stayed with me and took care of my pets and me). Two weeks off of […]

  • Has anyone had a jugular stent?
    by chbugo on March 18, 2024

    Hello Everyone, I have been lurking on the sidelines of this site for over two years during my Vascular Eagle Syndrome diagnosis, my left side styloidectomy, and 1-year post-op. I finally decided to make an account and join the community. This site has been a wealth of knowledge and anecdotal experiences for me to better understand this condition, so THANK YOU ALL! I had my left styloid removed […]

  • 3 months after surgery
    by Treaves on March 17, 2024

    I had surgery almost 3 months ago and ever since it has felt like my tonsils and adenoids are enlarged. My head and ears feel like slight pain and pressure. Went back to doctor 6-8 weeks after surgery and he prescribed antibiotics but i am still bothered by these symptoms. This is my second surgery in 5 years on my right side only. Previously i just felt pain on lower right side. Now i am […]

  • Reducing neck swelling
    by PatientD on March 16, 2024

    Hello For anyone with post operative neck swelling I have recently started using Comfiwave neck device which is new and was invented to reduce neck lymphoedema. Arm/leg comfiwave have existed for some time. It is very effective in my experience over last few weeks. It costs about £100, is very soft and can be washed & low tumble dryed. It lasts c 6 months. I will try to attach image below […]

  • Surgery on Monday with Dr. Hackman – If You Traveled for Surgery What Did You Bring?
    by ectocake on March 16, 2024

    My surgery day is Monday, March 18th and I’m having a bunch of feelings about it. I’m flying to Raliegh tomorrow and trying to get my house as much in order as possible. I’m feeling very positive about the pain in my ear and throat being gone, and I’m super hopeful that my vision will slowly return to normal, skeptical but still hopeful that my POTs is Eagle induced and I can see some […]

  • New to the Forum, Curious about experiences
    by MildlyAnnoyed on March 13, 2024

    Hello all, I’ve been checking out this forum for a while now trying to learn more about this condition. My symptoms began early 2023, but now that I have learned more about this, I suspect there may have been signs even earlier than that. My initial noticeable onset of symptoms came on somewhat randomly and pretty aggressively. It began with: Tight jaw muscles Sore throat, almost like strep, […]

  • Dr. Google Can’t Answer 🤔 Hyoid Bone and Ligaments
    by Psalm73_26 on March 13, 2024

    Hello all, looking for someone with experience or knowledge of how this works… I have read on here some horror stories about disturbance of hyoid bone after ES surgery. I thought that the hyoid bone did not need the ligaments to stay in place? Now I am learning that the hyoid bone DOES need the ligament to hold. A surgeon I consulted with said he would remove the calcified styloid process and […]

  • Ct scan opinions?
    by Alynncole10 on March 12, 2024

    3 posts – 3 participants Read full topic