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

  • I have a question about symptoms
    by slekeille on May 27, 2023

    Hey y’all! So sorry to post twice in three days, but I don’t have a single person I can talk to about this. Does anyone else experience burning chest pain secondary to burning neck pain from their ES? Like the involved nerves in the neck and jaw defer to the chest? Right now, and frequently in the last week or so I’ve been experiencing this. I have dysautonomia and vEDS (and I have two […]

  • Bilateral carotid dissection due to Eagle syndrome in a young female
    by KoolDude on May 26, 2023

    Abstract Eagle syndrome (ES) is a rare clinical syndrome characterized by the elongation of the temporal bone’s styloid process, or calcification of stylohyoid ligament, compressing surrounding structures causing pharyngalgia. One of its variants, the styloid-carotid artery syndrome, produces symptoms by compression of the external or internal carotid arteries (ICA). Here, we present a case of […]

  • Ultrasound Evaluation of Transient Ischemic Attack Caused by Styloid Process Elongation: A Case Report
    by KoolDude on May 26, 2023

    Introduction In 1937, Eagle first described the association of cervicofacial pain and other symptoms with an elongated styloid process (1). The syndrome named after him was divided into two types: classic stylocarotid syndrome and stylocarotid artery syndrome (SAS) (2, 3). SAS is essentially a vascular type of Eagle syndrome, which results in neurological symptoms, including transient ischemic […]

  • Styloid-Carotid Artery Syndrome
    by KoolDude on May 26, 2023

    A 42-year-old commercial pilot was placed on medical leave because of frequent episodes of syncope that occurred when he turned his head to the extreme right lateral position. The patient’s partner said that these syncopal episodes were accompanied by jerky movements that resembled seizure activity. The patient would regain consciousness as soon as his head became realigned in the midline. As […]

  • Venous Outflow Obstruction
    by Isaiah_40_31 on May 26, 2023

    Venous Outflow Obstruction is the new terminology for IJV compression in the ENT world. It can be caused by the styloid process, the transverse processes of C-1, & sometimes C-2 (rare), scar tissue, muscle/other soft tissues, and other things. Dr. Costantino has suggested that if you are diagnosed with Eagle Syndrome w/ IJV compression, you address it as Eagle Syndrome with Venous Outflow […]

  • Update on my Journey
    by EaglesWin on May 25, 2023

    Hi. I took several hours off of work again today, as I am feeling quite debilitated. Headache, jaw- so much pain, ear pain, Brain fog…I am finding it more and more difficult to function and taking a day or 2 each week off of work will likely not end well. In my feeling of desperation, I contacted Dr. Costantino’s office in New York. Very shortly after, I received a call from his MA. She […]

  • Cognetti knowledgeable about cci?
    by Bailey on May 25, 2023

    Hi everyone, I’ve been trying to read up more on eagle’s to prepare for my upcoming appointment. The more I read about cci and ES, the more scared I am. I might have cci, one doc thinks scans show I do and other doesn’t think so. I improved with invasive traction but not enough to qualify me for fusion surgery. So I’m scared if I get a styloidectomy or some other ES surgical […]

  • Patterns of cerebrospinal fluid (CSF) distribution in patients with spontaneous intracranial hypotension: Assessed with magnetic resonance myelography
    by KoolDude on May 25, 2023

    I know many of you want to know the signs to look for in case you suspect CSF Leaks around the spinal cord which can happen with increased Intercranial Pressure from IJVS. I find this Chinese study both informative and easy to visualize patterns to look for. It is not by any means exhaustive but a good primer for folks like us looking for a quick signs. Also, it is using MRI Myelography (MRM) to […]

  • Worried about stroke risk with elongated styloids/Stylohyoid ligament
    by LG18 on May 25, 2023

    Hi, I’m due to have a CT for suspected eagles syndrome soon. I’m a 26 year old male, and have symptoms of classic eagles syndrome with some milder vascular symptoms (sometimes I have a pusitlile tinnitus whooshing if I get up from a lying position quickly). I recently read this paper: Retrospective Investigation Of The Relationship Between The Stylo And have become extremely worried about […]

  • Newly diagnosed after 7+ years of symptoms
    by slekeille on May 25, 2023

    Hello! I am 33 years old and living with severe vEDS. I am in palliative care, but loving life. I work in tech full time from home, have four cats and one dog, and a partner of nearly six years (he’s amazing). I love taking our dog out, popping wheelies in my pink wheelchair, seeing live music, dressing in all the cute emo/bubblegum goth outfits I couldn’t afford in the early 2000s and […]