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

  • Retrospective Investigation Of The Relationship Between The Stylohyoid Ligament And Carotid Dissection
    by KoolDude on January 25, 2022

    A lot of Folks have elongated calcified Stylohyoid ligament which can irritate their Carotid artery along with cranial nerves. Here is a study that looks into the relationship between elongated stylohyoid ligament and carotid artery. The conclusion is that if the ligament is closer than 4 mm to the carotid, it increases the chance of dissection. It might even increase the chance of irritation if […]

  • Evaluation Of Styloidectomy As An Alternative to Jugular Stenting
    by Jules on January 24, 2022

    An Evaluation of Styloidectomy as an Adjunct or Alternative to Jugular Stenting in Idiopathic Intracranial Hypertension and Disturbances of Cranial Venous Outflow (nih.gov) An earlier research paper by Mr Axon & Mr Higgins- an interesting mention that ‘What we are seeing here, however, is a variant in which the styloid process is not necessarily elongated but is orientated in such a way […]

  • How to decide what side to do for surgery
    by hyperichard on January 23, 2022

    My surgery was postponed to March 9th, so I have had some lovely time to continue with my symptoms. However, I am starting to question the doctors’ opinion that he wants to do the right side and not the left instead (he wont do both). The issue I have is my most symptomatic side is the left by FAR, but he wants to do the right even though I have expressed my left side hurts and cracks extremely […]

  • How to identify styloid in this pano x-ray & get diagnosed?
    by ngage on January 23, 2022

    Hello, (x-ray in reply) I’m new. I’m 19M, and been suffering from headaches, neck/ear/jaw/eye pain, as well as having tongue cramps, slight face droop, & dizziness (everything on the right side)… It’s also ruining my sleep: when I wake up it feels like I didn’t even go to sleep. It started with headaches, neck pain, & sleep issues in June and has gotten progressively worse […]

  • Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction
    by KoolDude on January 23, 2022

    Here is study from UK’s best doctors for Eagle Syndrome Dr. Higgins & Dr. Axon. This is a case of CSF Leak caused by Bilateral Jugular Vein Compression by C1 Transverse process. The 56 year old patient suffered headaches and as his cognition and memory became impaired, he had to stop work. Eventually, he was confined to bed, most of the time spent asleep. After going through bilateral […]

  • Dynamic Internal Jugular Vein Compression by Hypertrophic Hyoid Bone: Management and Outcomes
    by KoolDude on January 23, 2022

    We are seeing a lot of Hyoid bone involvement in some patients here lately. Here is a case where the Hyoid Bone is compressing one of the IJVs. PubMed Central (PMC) Dynamic Internal Jugular Vein Compression by Hypertrophic Hyoid Bone:… Extracranial osseous compression of the internal jugular vein (IJV) is exceedingly rare. The clinical manifestations of IJV obstruction are very […]

  • 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 […]