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

  • Heading to my PCP today
    by Kiriez on February 19, 2024

    Going to see the PA in 4 hours. Hoping to get some sort of referal for a 3D CT scan. Been reading all the advocacy posts and trying to get a list of symptoms down. I can feel a boney lump under my right tonsil with my tongue/finger. It feels sharp. Also i feel like my throat is more asymmetrical than it used to be and that my right tonsil is kind of being “pushed out” a little from the object […]

  • New and Overwhelmed , any help appreciated
    by Reemz on February 17, 2024

    Hi All, I suspect that I may have ES, but I have yet to get a diagnosis. I have seen an interventional neurologist who looked at my scans and said I have significant narrowing of the internal jugular vein at the styloid process. I have had contrast CT scans and an angiogram done, and I am looking for someone who specializes in ES to take a look at my scans . I am in Toronto Canada, but am willing […]

  • Silly Question?… Why detach ligaments?
    by Psalm73_26 on February 16, 2024

    Hello, I am pretty new to ES. Can anyone share if they know if the ligaments that connect to the hyoid bone must be severed along with the calcified overgrowth being removed during the surgery? I thought only the calcified “fangs” (as I call them) needs to be removed, but do not understand why attachments to the hyoid bone must be cut. Does this vary from surgeon to surgeon? 4 […]

  • Chemical triggers
    by trl1964 on February 16, 2024

    I have bilateral ES with main symptoms being nasopharyngeal pain, dizziness, and fatigue. Over time I have realized that my symptoms are triggered or made much worse when my wife sprays hairspray or perfume while I’m in our bathroom. I’d like to understand what might be going on here. I believe the olfactory nerve does not run adjacent to the SP. But could a chemical odor trigger the vagus […]

  • Experiences of completed surgery for those with Ehler-Danlos
    by dontdillydanie on February 15, 2024

    Hi there, I have hypermobile Ehler-Danlos and Eagle syndrome. My doctor says I need surgery, but it hesitant because of my hEDs. He states that I could have permanent pain from having surgery. I would appreciate anyone who has had surgery and EDS to share their experiences with symptoms and pain post surgery. This information will help me to plan my next steps. Thank you so much. dontdillydanie […]

  • CTA Head and Neck + Attempt at 3D Reconstruction + Introduction
    by AdamLeavesEden on February 14, 2024

    Hi y’all. My symptoms started in 2019 (entering my sophomore year in college), when I began having an intense pressure sensation in the left side of my throat that would simply not go away. It was intense and unrelenting, and I started noticing voice changes along with the pain. I jumped around from urgent cares to ERs being told it was probably strep, or allergies, or GERD. I eventually ended […]

  • Caregivers
    by EllaK on February 14, 2024

    Hey! My partner @Henrik is up for surgery 28th of February. It’s been a long journey both before and after he got the diagnosis. It’s been heartbreaking too watch my significant other be in so much pain for so long, and the syndrome has impacted both our lives strongly. I’ve been struggling with a lot of guilt when trying to live my life, when I know my partner is struggling. I’ve talked […]

  • Introduction + (3D) CT images
    by rtpanda on February 14, 2024

    Hey everyone, I’m new here. Thanks for all the info on this site, it’s been very useful in hopefully helping me find some answers. I’ve had various symptoms over the last two years, ranging from head/neck/jaw pain, dysautonomia-like symptoms (chest pain, brain fog, pressure in the head, fast heart rate, heat flashes, dizziness, etc.), to pulsatile tinnitus, which is my main symptom and the […]

  • Turns Out I Have Covid and Have to Reschedule My Surgery
    by ectocake on February 13, 2024

    I’m absolutely devastated. I don’t know for sure, but I assume I will be canceling my surgery on Monday. I’m waiting to hear back from Dr. Hackman’s office. Covid is making my pain so much worse and I thought I would finally be on the road to recovery. It took so much to be able to have childcare so my husband could go with me. Not to mention the cost of changing my flight again. So much […]

  • Answers please
    by Stevesmith on February 13, 2024

    For a year and a half my only symptom was severe debilitating head pressure 24/7. As it progressed I noticed bending foward or down felt like circulation was cut off from my neck up and my head and face would fill with pressure. That progressively got worse over the last couple of months. But now out of nowhere I have a choking/strangulation sensation constantly right in the front of my throat […]