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.

 
 

Latest Discussions

  • Got my CTs to view thought I’d share
    by Dannib on July 23, 2021

    I don’t know if this is a good spot for this but I have already shared my story and have surgery scheduled but finally I get to view these myself. CT tech says not elongated and ENT says yes they are for my size (5’2) and angle and calcified ligaments. This dr has been doing this for 50yrs and is the only one in our state that even seems to know anything about ES. I am going with his opinion […]

  • Severe Pain Help
    by Hatty11 on July 22, 2021

    Hello all, I am new here. I was diagnosed with ES in Early 2020. Original symptoms were throat pain, tinnitus and headaches. They were manageable, but the tinnitus is finally drove me to seek out a specialist for surgery. I live in Florida, but am originally from the Philadelphia area so i found a specialist at University of Penn. Dr. R Dedhia was who I saw. He had agreed to do the surgery, but […]

  • I woke up without a sore throat for the first time in 20 months!
    by beachlady on July 21, 2021

    I had my surgery yesterday with Dr. Bunnell at UF Jacksonville, FL aka Shands. Everything really went well and I posted a picture of my surgery site on here. My neck is quite swollen but I feel great! Not too much pain at all. I was eating graham crackers about two hours after surgery. I had eggs and toast this morning in the hospital. The staff here is very good! Nice, caring and […]

  • Opinion please
    by Jjay76 on July 21, 2021

    I know you aren’t medical doctors, but I want your opinions please. My second opinion Dr. says I don’t have elongated process and there is a portion on ct scan that has me confused. I thought one of ya’ll might have seen this before. It looks like an upside down cornucopia with something coming out of it. Above the cornucopia is something white wrapping around it. What am I seeing? […]

  • Big day this Friday
    by optimistic on July 20, 2021

    Feels like I have been dragging a ball and chain around for decades, changed my job to ease physical strain on my body, cancelled appointment because I travelled to another country, then I caught covid, missing more appointments, and here I am, a few days and one orthopantomogram xray to go before I meet the ENT cancer surgeon. What if my car breaks down? Shall I take the motorcycle? That may […]

  • My Styloid Processes are both longer than 6cm
    by Asumhannah on July 18, 2021

    Hello everyone, I am 26 years old (June 12th) and I was recently diagnosed with ES. My styloid processes on both sides are longer than 6cm. I cannot tell you how happy I am to finally know what is wrong and have a proper diagnosis, however, I’m terrified. I have been having ENT issues since for the past few years but didn’t exactly notice they were related. In the past 6 months (at least) […]

  • Immense pain and still feeling symptoms 6 weeks post surgery
    by Rogi on July 16, 2021

    Hey everyone, I’m new here. Its my first post. I’m 26 years old. I will try to explain myself and be as short as I can be. More than two years ago (April 2019) I started to feel an odd pain in my left side of the neck. After Few days I remember I literally felt three is a bone in my throat that I couldn’t reach. For 6 months I did all kind of tests, MRI, and more. Doctors said to me all […]

  • Australia
    by Hally on July 16, 2021

    Hello everyone I am new here. I live on the border of Victoria and New South Wales and am considering booking in to see Dr Roy Nicholson ENT from Geelong. Has anyone seen him for their ES and has anyone had long term success from having their styloids removed? Thank you 1 post – 1 participant Read full topic

  • New Diagnosis- Eagle Syndrome
    by Dannib on July 15, 2021

    Hi! I have been so thankful for this forum! I have been reading from this for months now and finally found an ENT experienced in ES. My dentist found it on a scan she did for my TMJ issues (diagnosis TMD both sides of jaw). After her telling me what the bone issue was called my husband and I started our research because we had never heard of this before. I had every single symptom listed and then […]

  • Question about ENT
    by Stella on July 15, 2021

    I want to start by saying thank you so much to Jules!! I’ve finally figured out how to post a question… So I’m really new to ES. I was diagnosed by a radiologist in March 2021 after 2 plus yrs of struggling with horrible left sided ear pain and after my dentist pulled two of my upper molars out and saying they were fine bc I was complaining that they felt like I needed a root canal. Also […]