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

  • X-ray input?
    by Greenway22 on May 21, 2022

    I have a separate post regarding my symptoms and story. Currently pregnant so can’t get a CT. Was able to get some basic X-rays from my chiropractor from almost a year ago. Curious if anyone can tell anything from these or if it really doesn’t help anything. I had a little input on my last post but curious for more info if any regarding elongation, calcification, angle… anything! You might […]

  • ES, Dentistry, Ear Canal Pain, and Air Travel
    by kraunque on May 20, 2022

    Hello everyone! I am so happy to have found this forum and read the posts I’ve read so far. How wonderful that this is here! So, after a panoramic scan (picture shared below), my dentist told me he thinks I have ES. I’ve been trying to make an appointment with Dr. Hepworth, but he is currently not taking new patients according to his phone staff. They suspect I may be able to call in June […]

  • Ct scan in a few days
    by Ladybug on May 19, 2022

    My ct scan is in a few days. I’ve read that several people end up having the scan done, and no styloid measurements are given, even in situations when they are elongated. I don’t know if my orders specifically ask for measurements. Should I ask the tech when I go? Would they add that in there if I request it? Or would I need my doctor to ask for that? 3 posts – 3 participants […]

  • Muscle removal
    by Millymay on May 19, 2022

    My doctor told me he’s removing the styloid and the digastric muscle at least that’s what it looks like on the diagram he gave me, definitely removing a muscle, does everyone get that muscle removed ??? 5 posts – 3 participants Read full topic

  • Hello friends!
    by Neli on May 19, 2022

    Hello friends! I am happy to have found this site for support and help. I am from Bulgaria. I apologize for the English, I’m not very good and I use Google Translate, but I really want to share my troubles on the path of Eagle. It all started at the end of December 2021. I felt something stuck in my throat on the top left that I couldn’t swallow. The feeling was unusual without pain. I […]

  • Surgery tips please
    by Millymay on May 19, 2022

    Spoke to my vascular surgeon this week, he’s going to take out the styloid and the muscle, to hopefully release my jugular vein, surgery is about six weeks out and his nurse is off sick so I might have to wait a week or two before I know my surgery date, he’s going to do the left side first, hopefully it helps, any advice on before or after surgery tips? 3 posts – 3 participants […]

  • Most recent research articles on Eagles and Jugular Vein Compression – Ivy League Authors
    by melissawhiley on May 17, 2022

    https://drive.google.com/drive/folders/1y0StpasJfL3GdCqtxQUL1CjtFY68WpHD?usp=sharing Contents within the shared folder: 2 posts – 2 participants Read full topic

  • Surgery scheduled for 6/29 with Dr. Omlie
    by tokenegret on May 17, 2022

    Well, some good news! A date opened up on 6/29 and I’m scheduled! 6 posts – 6 participants Read full topic

  • Dagger Alert
    by Cody on May 17, 2022

    I am scheduled to have this dagger styloid removed May 26. I am glad it is finally happening. I have a lot of symptoms, but the big one is not being able to breath when I bend down. My question is, do you think my hyoid bone also has problems? It is much larger on one side and it is not level. Any advice or recommendations would be appreciated. 9 posts – 5 participants […]

  • Surgery scheduled with Dr Hackman for vascular ES
    by elijah on May 17, 2022

    Hey y’all, Super excited that my surgery for double styloidectomy has been scheduled for June 20th with Dr Hackman. My appointment with him was great, he really listens and while he can’t explain all the symptoms related to vascular ES, he acknowledged that he sees improvement with many of his patients and there is some sort of correlation that we just don’t understand yet. He most […]