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

  • UPDATE: Hepworth, Plavix and Maye Thurner Syndrome
    by Bopper on December 7, 2021

    HI Everybody! I had my latest appointment with Dr. Hepworth yesterday, and learned some interesting things that I thought were worth sharing. First, I told him that my symptoms have gotten MUCH better, but if he still thinks surgery would be beneficial, I am ready to schedule it. He said that he thinks my symptoms have improved because the Plavix has “remodeled” my venous system around the […]

  • First Consult – Dr. Ramirez
    by Chromechaser66 on December 7, 2021

    Had my first consult with Dr. Ramirez in Warren, MI late last week. For the first time since I started this crazy ride in 2014 with a carotid artery dissection, I felt like I was speaking to an experienced expert in my area. While Dr. Fessler is clearly super sharp, he’s an endovascular neurosurgeon. Different skill set. I’m happy to have them both in my court now. Dr. Ramirez clearly knows […]

  • Can’t even go over a speed bump or my head feels like it could explode!
    by Freedom on December 7, 2021

    I’ve had migraines and headaches since I was a child (I’m now 35). 3 years ago I kept almost fainting and vomiting for 6 months. That improved and then this exploding stabbing pain started in my head on the left side.My head hurts all the time with either a migraine or this exploding pain followed by my tongue going numb, feeling faint and like “I’m going to die”. I can’t exercise, […]

  • About the Patient Self Advocacy category
    by Mod_support on December 6, 2021

    Be the best patient you can. Get the best care possible. Find and connect with those who can help. Help others too. That’s Advocacy. Registered members only 1 post – 1 participant Read full topic

  • Today is so bad…Need support 😭
    by painh8er76 on December 6, 2021

    I feel like something moved or changed overnight I have most symptoms on left side. I am having more pain, feel like throat is swollen, like something is poking it inside, scratchy. Eye pressure, eye pain & eye floaters. My head is pounding & the ringing in my ears & head is making me crazy. Have this loud whooshing sound in my head. Popping & cracking at base of skull. My neck on […]

  • Transient unilateral throat and facial weakness Going on 14 years
    by jack on December 6, 2021

    Nice to see this site. My symptoms started 10/07. Had left facial palsy and weakness on left side of body. Ended in hospital with what was though to be stroke. Symptoms came and went numerous times during next week. Symptoms came and went over the years, sometimes debilitating. Along with above have ringing in ear with body weakness not so bad. Starting 6/8 years ago notice that I would get […]

  • Pain Management While Waiting to See ENT
    by painh8er76 on December 4, 2021

    What helps with ES pain? I go to ENT Dec 10th. This pain is downright debilitating & this has completely devastated me to the point that I cannot even handle basic functions & have to have help. I cannot go anywhere as I cannot hold my head up for very long & the pain just tuns up 1000%. I am taking Tylenol & Ativan. It doesn’t do anything for me at this point. Would love to […]

  • Somatosensory Tinnitus (From Past To Now) / Tanit Ganz Sanchez (ENT)
    by vdm on December 2, 2021

    A few interesting, albeit old slides from one Brazilian ENT. Conclusion: some somatosensory tinnitus might be eased by non-surgical options, including routine eye movement exercise and releasing tight upper trapezius/scm muscles. slideshare.net Somatosensory Tinnitus (From Past To Now) Somatosensory tinnitus (from past to now) Tanit Ganz Sanchez, MD, PhD TINNITUS […]

  • Jugular compression on 3D images
    by Bopper on December 1, 2021

    So I finally paid someone to create 3D images for me. The resolution isn’t great, apparently because of the way the files were formatted. But he said he could see the IJV compression on both sides. And also that my styloids look like a normal length. Both under 2.0. Along with all of the normal disclaimers that he’s not a doctor and not diagnosing me. So wanted to hear what you all think, […]

  • What were you diagnosed with prior to ES?
    by sparky on December 1, 2021

    My main symptoms are Ear pain and Ear Fullness and Tinnitus (both Sides), a constant Headache and noise sensitivity which means I rarely listen to music these days. I can swallow OK, but it feels uncomfortable in my throat so I don’t enjoy eating and drinking as much. Previous to my ES diagnosis, previous ENT doctors diagnosed me with Eustachian Tube Dysfunction. For Me, The ES diagnosis now […]