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

  • Resources for a Non-biased 2nd Opinion
    by Isaiah_40_31 on November 28, 2023

    Below are two organizations that will read MRI & CT scans (with or without contrast) and give a second opinion if you believe you haven’t received an accurate assessment from your initial radiology report. They do charge a significant fee for doing this. I checked with MD View, & their fee starts at $650. I don’t know what Radiology Business charges. MDView […]

  • I’m newly diagnosed and new here: I have so many questions
    by gnriggs79 on November 28, 2023

    Hello everyone! I am new to the group and newly diagnosed. I see Dr. Hackman in January at UNC. I have a few questions/thoughts (okay, a lot): I have severe TMJD (diagnosed finally 8 months ago) and currently in treatment (appliance therapy, etc). Both meniscus discs are dislocated and the left is torn, I have spurring etc. All of this confirmed via numerous imaging (MRI, CT Scans, etc). I also […]

  • Treatment timeline
    by Rlr286 on November 28, 2023

    I am trying to decide what type of health insurance plan to select for next year (high deductible vs PPO). I am fairly certain I will need to have surgery and am in the process of making an appointment with Dr. Milligan in Phoenix. For those of you who have had surgery, how long did the process take from the time you had your first appointment with your surgeon? I’m wondering how likely it is […]

  • Artificial Intelligence/ AI in radiology
    by vdm on November 28, 2023

    Stolen from some FB group: Multiple Sclerosis News Today – 27 Nov 23 FDA clears AI tool to quickly detect MS activity on MRI brain scans Pixyl.Neuro, a software that uses AI to analyze MRI brain scans, received 510(k) clearance from the U.S. Food and Drug Administration. Est. reading time: 2 minutes Hopefully one day we’ll […]

  • Final Styloidectomy/IJV Decompression
    by Isaiah_40_31 on November 27, 2023

    Posted for @Violin: On September 27 Dr Hepworth did my left-side styloidectomy and jugular decompression. I was disappointed that he did not fix my voice, which still is overly treble and weak due to being damaged during the right-side surgery which included thyroidectomy (for Hashimoto’s) on May 24. The right vagus nerve was tangled around the styloid. The good news is that otherwise, all is […]

  • Styloidectomy, CSF Leak, Spine, Jaw | All the stuff
    by Hello_World on November 26, 2023

    Wondering if anyone here has about, or has experienced doing a pledget study? I am scheduled for a fast approaching styloidectomy. I’ve had a CT Sinus w/ contrast imaging that showed evidence of a CSF leak from sinuses. I am being asked to schedule a 2 day pledget study to check for a CSF leak prior to the styloid surgery… I believe the doctor would repair the CSF leak at the same time as the […]

  • Feeling sorry for myself
    by Sunflower50 on November 25, 2023

    Why do I feel so incapacitated? Why do I feel so exhausted all the time? Why does my head and neck feel so weird. Is this how people really feel? So, so sick. Practically bedridden. I’m at a loss. I need hope. I need healing. Finally, the nueroradioligst who diagnosed me is going to have a zoom meeting with me and the ENT who sent me to him. How can they not help me. How come they didn’t […]

  • MRI contrast risks / Gadolinium toxicity
    by vdm on November 25, 2023

    Here is a long overdue post. Due to my personal circumstances, I started looking into toxic effects of MRI contrast. And what I found, is extremely shocking. Many of us have got/are going to have MRI venograms (MRV) to investigate vascular system, so it might be worth reading… Briefly, MRI contrast media (GBCA – Gadolinium Based Contrast Agent) is made of heavy, extremely neurotoxic metal […]

  • Pulsatile tinnitus
    by PamelaInNYC on November 25, 2023

    Has anyone studied the mechanism that explains why pulsatile tinnitus is worse at night for those with IJV stenosis? -Is it inflammation of the connective tissue (fascia) with activity, causing decreased space for the IJV? -Activity causing increased blood flow? -Increased instability of C1 with movement? -And/or other factors? CTVs are done in the AM but I rarely have pulsatile tinnitus in the […]

  • Need some help with my CT scans
    by Sprinter on November 25, 2023

    First time having a go at this and I can’t see the veins properly or ligaments one styloid looks to be at a complete different angle to the other and going behind the jaw Can anyone help or advise me please on best way to do rhr scans or have I got the wrong scan here 18 posts – 4 participants Read full topic