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

  • Paper About IJV Stenosis & TOS
    by Jules on September 30, 2022

    Thanks to Bopper for posting this.Internal jugular vein stenosis – Neurosurgery 1 post – 1 participant Read full topic

  • Surgery Date with Dr. Cognetti
    by KoolDude on September 29, 2022

    Hi Everyone, I just wanted to wait till I talk to DR Cognetti to update you all since I was also considering other US doctors at the same time. I did have a consult with him yesterday and found the guy very kind and knowledgeable though he was not a vascular guy, he understood the IJVS thing very well. So I decided on him given the competitive price he offers for Canadians coupled with his […]

  • Surgery September 26
    by MamaBear6 on September 29, 2022

    Hey everyone!! So sorry for the delay in updates!! I don’t do well with Anesthesia or Pain Meds, on top of preparing for Hurricane Ian, it’s been a bit chaotic!! Prepping for Surgery was harsh because I have awful Veins… so even with a Vein Finder, they still ended up having to stick me a total of 8 times (twice during my Procedure) for an IV… everyone was very informative and thorough […]

  • Surgery recovery roadblock
    by elijah on September 29, 2022

    Hi all, I’m looking for some insight into my surgery recovery situation. I had bilateral styloidectomy June 20th for vascular eagles. The good news is that my vascular symptoms are gone, so there’s no question the surgery is a massive success and I’m really happy I did it. The bad news is that I seem to be recovering very, very slowly and I’m unsure what I should do next or if there is […]

  • Not a good report, plus has anybody here had a stent?
    by Bopper on September 27, 2022

    Soooooo. I just had my follow up Ultrasound and saw Dr. Hepworth. The news is not good. Apparently my jugular has slammed back shut. “Chronic, occlusive venous scarring of the left jugular from C1 to the foramen.” Which is why I’m still symptomatic. Dr. Hepworth was very transparent in his disappointment, which I appreciated. He said my two choices are to stay on blood thinners basically […]

  • Two week update with pic
    by Michael123 on September 27, 2022

    Still alot of swelling around cut but its healing .alot less pressure and head pain. Still have ear and face pain #recovery #eagle symdrome 10 posts – 5 participants Read full topic

  • Not sure what to do… any thoughts appreciated!
    by SamiA on September 24, 2022

    I just learned of ES last week… which is going to sound odd given what I am about to say. June ‘21 I had my Tonsils removed solely because my L styloid was calcified and poking 2mm past my tonsil (did not perforate but that was the concern). No other tonsil issues historically such as strep, tonsillitis (no other reason for bilateral tonsillectomy. ES was not mentioned to me at the time […]

  • CT Scan Pics, broken styloid or scan error? Compression?
    by blistle on September 23, 2022

    Hey all! After a nightmarish journey through the depths of my insurance company, I finally have a CT scan. I set it up in Slicer but I have no idea what it means & won’t hear from anyone about it for a while. Here they are… Right side: It looks to me like there’s a breakage in the bone there. Could this be an error in the imaging? The pain is more severe on my right side so I wouldn’t […]

  • Symptoms returning 2 years post surgery
    by Be_kind on September 23, 2022

    Hi all, it’s been a while. A couple of years ago after having constant poking/pain in the left side of my throat, horrible back of neck and head pain, clicking/crunching in my left jaw, pain in/behind left ear, trouble turning head from side to side, tingling in face and top of head, heart palpitations and (possibly related or unrelated) occasional anxiety, and a constant tenderness/pain under […]

  • Brief introduction to body muscles
    by vdm on September 22, 2022

    https://www.youtube.com/embed/lxCoCAcPmZM Why this is important: improper posture, improper control of muscles possibly may cause or increase symptomatic Eagle’s. This video has a good overview of all the muscular systems and what they are supposed to do. 2 posts – 2 participants Read full topic