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

  • New diagnosis story…thankful for community
    by Becc87 on January 22, 2022

    Hi all! I’m so glad I found this group! I have been dealing with stabbing throat pain when swallowing since back in October (which I know is not long compared to some people here). At first, when it didn’t spread beyond the one spot or come with a fever or any of the normal things that accompany a sore throat, I figured I’d wait it out and it would go away or see if there was a tonsil […]

  • Ponticulus Posticus
    by Jules on January 21, 2022

    Research article posted by @bmcdiddie:Is there a relationship between the presence of ponticulus posticus and elongated styloid process? – PubMed (nih.gov) 1 post – 1 participant Read full topic

  • Eagles syndrome and ponticulus posticus?
    by bmcdiddie on January 21, 2022

    Any other folks out there with both elongated styloids and ponticulus posticus? study shows there is a possible connection between the two – or at least people that have one are more likely to have the other they found both bilateral loops and elongated styloids with my xrays PubMed Is there a relationship between the presence of ponticulus posticus and… This study aimed to determine if […]

  • Https://onlinelibrary.wiley.com/doi/abs/10.1002/hed.23675
    by Jules on January 20, 2022

    This paper was posted by Siren, very interesting!Wiley Online Library Atypical presentation of Eagle syndrome with hypoglossal nerve palsy and… Background Many nerve injuries have been associated with Eagle syndrome. The cranial nerves V, VII, IX, and X have been reported to be injured by the elongated styloid process in this syndrome. Me… 1 post – 1 […]

  • Eye Symptoms
    by Siren on January 20, 2022

    Looking through the articles, I came across Horner Syndrome and looked it up. Thankfully I don’t have persistent difference in pupil size but I did have an incident where I woke up one morning in Oct 2021 and my left eye pupil was smaller than the right. I was going to go to eye ER if it continued but it went back to normal after a couple hours. Anyone else have weird eye symptoms? […]

  • 1 year post op left styloidectomy and still in pain
    by deezy456 on January 20, 2022

    I had left side styloidectomy 1 year ago with Dr. Delacure. The surgery was rather uneventful, left that day and went home on just tylenol and advil, ate whatever I wanted and was back in the gym a week later (modified of course). However, the symptoms and pain are all still here… I was referred to the center for the study of pain in NYC, Dr. Delfino. They tried an injection into the ligament, […]

  • First Surgery with Dr. Heim completed
    by Eaglefatigue on January 19, 2022

    Hi everybody! Woke up after Surgery an hour or so. Getting Dexamethasone per perfusion, to reduce swelling but also for prevention of Addisons in my case. Felt a little dizzy when I stood up, and speaking feels a little blurred, but : I’M ALIVE!! I was already told, that my Stylohyoid Ligamnt was completely ossified and probably pulling the right hyoid towards the back. Concerning my IJV, they […]

  • Getting Started with a Quick Start “How To”
    by Mod_support on January 19, 2022

    Welcome to Ben’s Friends! To help you get started, this printable document contains tips and a Quick Start how-to. 1 post – 1 participant Read full topic

  • Most Likely a Long Time Sufferer of ES, Anyone Else? Plus Rant
    by Siren on January 18, 2022

    Hi Everyone, Nice to meet you and I’m glad I found this website! I live in Canada and migrating through our health system has been torture. Where do I even start?! I had constant strep throat as a kid and had tonsillectomy at age 12. I suffered from headaches since I was a kid and had back issues but was active. As an adult I would have the occasional flare up of my pain around my ears and […]

  • GOKCE, C. et al. (2008) – Styloid Process Elongation or Eagle’s Syndrome: Is There Any Role for Ectopic Calcification?
    by TheDude on January 16, 2022

    PubMed Central (PMC) Styloid Process Elongation or Eagle’s Syndrome: Is There Any Role for Ectopic… The styloid process (SP) is a cylindrical, long cartilaginous bone located on the temporal bone. The normal SP length is approximately 20–30 mm. The styloid process elongation (SPE) can be assumed if either the SP or the adjacent stylohyoid ligament… “Ectopic […]