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

  • Awaiting treatment plan – newly diagnosed
    by Welshy59 on March 30, 2023

    Hi there – I recently had the results of a head/neck CT scan that I had in December and my GP told me I have ES. I have an appointment with the hospital consultant (ENT) in July so no treatment plan as yet. My GP had never heard of ES and had to google what is was! My symptoms started just before lockdown (UK based) so around March 2020. I had a feeling of something sticking in my throat but only […]

  • Long overdue update
    by 1speechpick on March 28, 2023

    Hello family! Sorry it’s been so long since ive been in touch. If you recall, I had MVD surgery 6/22. Was doing pretty well postop, then had a CVST 8/22. The brain blood clot caused intracranial hypertension and papilledema. I had emergency surgery for LP dhunt placement 11.2.22. Ever since shunt placement, i went into low brain pressure symptoms. By December 1, 2022 my doc agreed it was […]

  • Spring is Coming
    by Duckie on March 27, 2023

    Hello all! I am now scheduled to see the surgeon, yay! Progress! Actually, I went ahead and scheduled with two surgeons at the same time so I could get two options to work with. Now…the long wait. Both appointments are scheduled for June. I feel frustrated and exhausted just thinking about having to wait that long. However, it is giving me time to think of questions and concerns to talk […]

  • Ct scan with contrast
    by Greenway22 on March 26, 2023

    Hi, Months back I was pregnant and in extreme pain considering that ES may be my problem. I felt a lot better after giving birth and most of my issues went away. Slowly symptoms are starting to creep back up and I find myself again wondering if it could have anything to do with ES. I was able to get a ct scan with contrast but they did not check my styloids. I’m also not sure what exactly I […]

  • Suspecting ES, scared and waiting for diagnosis
    by abbyd92 on March 26, 2023

    Hello, new here! I recently found out about ES after dealing with TMJ issues over the last several months but after stumbling upon ES, my symptoms are also relating to ES as well. I apologize in advance for the long post and backstory. Last June 2022 I saw an ENT: for several months prior I was experiencing some pretty bad ear pain (lots of pressure, pain inside and around ear), nausea, and […]

  • Anybody else been diagnosed with MALS?
    by Bopper on March 24, 2023

    So I saw Dr. Hepworth today. He said my CT scan shows “moderate evidence” that I have MALS. I asked him if this was a theory or a diagnosis. He said it is a diagnosis. So now I’m learning all I can about MALS. I guess it explains some of the GI issues I’ve had that nobody has been able to diagnose. I’m not sure it explains my shortness of breath, but I hope it does. I just had upper and […]

  • My CT Scans – What do you think?
    by Melodious21 on March 23, 2023

    Hi Everyone! I just got the results back from my CT angio/venogram. I don’t physically have them yet since I went over them with my doctor who ordered them in a televisit but he’s going to mail me the disc soon. I have images from my CT myelogram from last year on here first, which is where my doctor was looking to see if I had a CSF leak noticed that my styloids were both elongated, and that […]

  • Revision with Hackman
    by MamaBear6 on March 22, 2023

    Hey everyone!! MamaBear checking back in, sorry its been a bit but Im just trying to wrap my head around everything… After a CT Angiogram, it showed that I have 1.7cm of Calcified Styloid with IJV Compression on the Left and 3.3cm of Calcified Styloid on the Right (POSTOP) I havent tried reaching out to my Surgeon because i just feel let down, cheated, honestly… the measurements dont match up […]

  • Surgery scheduled next week
    by bloomin_onion on March 22, 2023

    Hey everyone, I am supposed to be having an external R Styloidectomy next week with Dr. Lentsch in SC. Just wanted to reach out and see if anyone else has used Dr Lentsch? (I saw some older posts but was wondering anyone recently?) 7 posts – 3 participants Read full topic

  • JUGULAR Eagle Syndrome
    by 334455 on March 22, 2023

    Hii there!!! Yesterday got Surgery and my styloid was affecting my ijv and also lymph node was affecting my ijv and a fully trained Surgeon did my procedure by transcervical approach… Feeling much better today is day 2… Gen. Shoaib Ahmad An Ent Surgeon HOD OF ENT WARD CMH RAWALPINDI… 4 posts – 3 participants Read full topic