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

  • First surgery scheduled Mr Axon
    by Aleabee on October 20, 2021

    It has been quite some time since I last posted and a few more conditions diagnosed, but I finally have the first styloidectomy surgery date in four weeks time. As a re-cap, I first noticed things were not right in 2015 with a strange tickling and gagging sensation when I pressed an area of my neck. Since that time I have been diagnosed with bilateral elongated styloid, bilateral superior […]

  • Thoughts while I wait…
    by Tjmhawk01 on October 20, 2021

    I seem to have nothing but time on my hands while I await for surgery scheduling and spend a lot of it studying and searching this forum. In the midst, the pain is really unbearable most days despite trying to keep busy with other things. Last night I took a brisk walk just to cry in peace and say a prayer. Some of the pain I understand. Some I don’t. For example, I get how nerves are […]

  • Another great review for Dr Hepworth
    by Jjay76 on October 19, 2021

    Hey all I went to Dr Hepworth for a second, well 3rd opinion, actually. Night and day difference from Dr Chan Levino. The PA showed me the scans and pointed out what she was seeing on them and it was so clear that I have bilateral jugular compression. She even pointed out two additional things; a large thyroid nodule and transverse sinus stenosis which is possibly compressing the brain. That will […]

  • Professional Singer Diagnosed with Eagle Syndrome – Surgery with Dr. Cognetti November 5th 2021
    by MVO on October 18, 2021

    Hi Everyone! First of all I just want to say thank you so much to those who monitor this site as well as share and give advice. It not only impacted my decision to have surgery and choosing a doctor but also helped me finally be properly diagnosed and gave me peace of mind. Here’s my story: I am a professional singer, musician and songwriter. First time I noticed discomfort was four-five years […]

  • Am I too young to have ES?
    by Mnfarr37 on October 18, 2021

    Hi all, I have seen 3 ENT’s over the last few months and I am desperate for relief. The 1st ENT told me I am making it up and I am fine because I am young (25 years old). The 2nd ENT said it is ES, but he doesn’t do surgery. He saw 1.6 CM of calcification on the styloid ligament. He did not mention anything about the styloid process bone. The 3rd ENT said the CT showed calcified ligament of […]

  • Suggestions on how to stay strong?
    by hyperichard on October 18, 2021

    I am currently in my third year of college for a BFA acting program, that if I leave the only way I could come back is if I started all 4 years over again. The reason for this is because all BFA acting programs across the united states choose the class they want as an ensemble through acting the 4 years, so if I leave I can’t go back, and all my acting credits are practically useless to another […]

  • Surgery with Dr Hackman Nov 8th
    by Stella on October 17, 2021

    I want to first say how thankful I am to all of my Eagles family. I wouldn’t of gotten to where I am if it wasn’t for you all. I had an appointment the end of September with Dr. Hackman. He was so nice and confident. I wasn’t sure what to expect but he said here is what I can do for you. He pulled up my CT and said my styloids were measuring 4.2 on left and 4.0 on right with fractures on […]

  • Confirmed ES with Dr. Omlie today
    by Tjmhawk01 on October 14, 2021

    Dr. Omlie officially diagnosed me with ES today. I am very pleased with his demeanor. There was nothing clinical about him and he came into the exam room with photos to show me exactly what he does and the anatomy of the area. Very compassionate, very realistic yet very professional. His assistant nurse was equally compassionate and very up front. Dr. Omlie stated he’s done about a dozen […]

  • Got a call from my ENT, want me to come in for a follow up after receiving CT scan results
    by beccaaaaa1 on October 14, 2021

    Well, just what the title says. I got a call from the assistant to my ENT this morning and they want me to come in for a follow-up tomorrow morning to go over the results of my CT scan. Every symptom I have can be explained by ES so I am trying not to spiral but it is alarming me. No one likes to hear they have to come back for a follow-up after getting any type of tests done. Please send good […]

  • JEYARAJ, P. (2021) – Etio-histomorphogenesis of Styloid enlargement – A Novel & Extensive Light Microscopic Analysis of Ten cases of Eagle’s Syndrome.. Oral Surgery. Accepted Author Manuscript
    by TheDude on October 14, 2021

    This is another interesting article. Unfortunately it has no open access and I only saw the abstract. Wiley Online Library Etio‐histomorphogenesis of Styloid enlargement ‐ A Novel & Extensive… Aim & Objectives To carry out detailed light microscopic analysis of excised specimen of Elongated Styloid Processes (ESPs) from patients suffering from Eagle’s Syndrome (ES). To thus […]