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

  • Does Dr. Hepworth perform both Styloidectomy and Stenting procedures? Chiari anyone?
    by Goose on January 28, 2023

    Hello again! I am trying to determine my next destination in diagnosis. Does Dr. Hepworth in Colorado perform both the ES / Styloidectomy and Stenting surgeries? Is there anyone in this group that have had Chiari? If so where did you get diagnosed and or treated and what would the differentiating symptoms between ES and Chiari be? They seem to overlap in symptoms in a big way. Thank you, G […]

  • Symptom questions
    by painintheneck on January 28, 2023

    Hello again, I just posted for the first time and my list of unanswered symptoms feel like it can go on and on. Is neuropathy and swelling in the legs (both) possible from eagle’s? No doctor can tell me why my calves swell up and had so many tests done plus lots of pins and needles in my feet. Can this be blood flow issues and circulation because of compression caused by eagle’s? […]

  • Desperate for an answer
    by painintheneck on January 28, 2023

    Hi there! I was diagnosed years ago and saw Dr. Cognetti in P.A but decided not to do the surgery. For years I am struggling with fatigue, dizziness, extreme bouts of depression and anxiety, brain fog and especially in the morning feeling like I was drugged the night before and have so much trouble waking up and then feel like a zombie for at least the first hour of the day, can’t get going or […]

  • Ben’s Friends Lead Interns
    by BF_Writer on January 27, 2023

    Sascha Gallardo – February 1, 2021 Keeping Ben’s Friends communities safe and supportive would not be possible without the help of wonderful people who devote their time and skills to meet this objective. We have moderators who take care of their respective communities in various ways such as by screening membership applications and flagging posts that affect the friendly atmosphere we […]

  • CT Temporal
    by Goose on January 26, 2023

    Here is a picture I took of of imputed if ct temporal. Any input would be much appreciated. Thank you. 4 posts – 3 participants Read full topic

  • Pain with leaning and Doctor in Nebraska?
    by Goose on January 26, 2023

    Hi. Is pain and strange feelings when you lean from side to side common with ES? So many querstionss… just got homw and I am about dying from pain when I turn my head… Thinking about just going to the hospital… scary feeling of intense pain. Called my ENT… He does not do this kind of surgery but has two doctors that do treat it in Arizona but I was told they are not taking new […]

  • Bilateral surgery 6 weeks ago – recovery process
    by Angie59 on January 26, 2023

    I’m glad I found this forum and I wish I had found it before, on this long ES journey. I’m French, sorry in advance for my English mistakes. My symptoms started in April 2022, I suddenly had difficulties to swallow and eat, as if food got stuck in my throat. Then I felt stabbing in my neck and throat constantly. I also struggled with huge pain near my larynx while talking, and felt strangled […]

  • Nonprofit SnapCast features Ben Munoz
    by BF_Writer on January 26, 2023

    Sascha Gallardo – February 24, 2021 Nonprofit Snapcast, a podcast that tackles nonprofit management issues, recently featured Ben’s Friends president and co-founder, Ben Munoz. The interview focused specifically on how the organization is able to do more with less. Ben explained that the main reason why the organization thrives even though it has never had large resources is because of the […]

  • NYC surgeons?
    by KimberlyNYC on January 25, 2023

    Hi everyone! First time posting … after years (decades) of pain I finally have a diagnosis of ES which is an incredible relief. Now I face what feels like a huge decision: choosing the right surgeon. I have bilateral elongated styloids (left styloid extends into the parapharyngeal space), calcified stylohyoid ligaments and bilateral IJV compression. Does anyone have recommendations for surgeons […]

  • My sister story with ES
    by Zekri on January 25, 2023

    Hi everyone, My sister 39 old asked me to share her story here in this forum maybe someone can recommend her to do surgery or not, Sorry for bad grammar i translated it with Google translator. Will update this post with more information about the surgery she made in details. She wrote : The first feeling of improvement was immediately after waking up from the operation. I felt a great change in […]