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

  • THOENISSEN et al. (2015) – Eagle’s syndrome—A non-perceived differential diagnosis of temporomandibular disorder
    by TheDude on September 23, 2021

    PubMed Central (PMC) Eagle’s syndrome—A non-perceived differential diagnosis of temporomandibular… This article unveils a case of the classic styloid syndrome and states that panoramic imaging and ultrasound can be an alternative to computed tomography. In addition, the endoscope-assisted extraoral approach using CT-based navigation is useful…. 1 post – 1 […]

  • TRAVELL; SIMONS (1998) – Myofascial pain and dysfunction : the trigger point manual — Chapter 5 – Head and Neck
    by TheDude on September 23, 2021

    Here is the link to a preview chapter (head and neck – perfect for us ) of the book mentioned above. It is very interesting for us I think for understanding the pain and tension. Maybe the mentioned therapies are also good, but better ask an ES expert doctor before doing. Surprisingly, there is even ES mentioned there (Page 74). I think you should also be interested in that, @vdm, as military […]

  • MORRISON et al. (2014) – Familial ossification of the stylohyoid ligament in a three generation family–a new clinical entity displaying autosomal dominant inheritance
    by TheDude on September 23, 2021

    Here is an interesting Article about the genetics in ES: Morrison, P., Morrison, R. J., & McKinstry, C. S. (2014). Familial ossification of the stylohyoid ligament in a three generation family–a new clinical entity displaying autosomal dominant inheritance. British Journal of Radiology, 85(1012), 458-459. PubMed Central (PMC) Familial ossification of the stylohyoid ligament in a three […]

  • Extreme Anxiety
    by Emily9067 on September 22, 2021

    Hello Everyone, I first want to say that I do not intend to take attention away from anyone with debilitating symptoms and thank you for welcoming me to this forum. I have an elongated styloid process, but not necessarily Eagle Syndrome. I found this incidentally by taking a picture of my throat with my phone when I thought I might have been getting sick and noticed a bulge in the back of my […]

  • Best scan to get?
    by bjane on September 22, 2021

    What do you guys think would be the best scan to get to see the styloid’s? What have others had? CT scan of the neck with contrast? Something else? Originally I was seeing an ENT for an ear problem. I had a CT scan of my head October 2019. About six months ago an ENT looked at this old CT scan when I was there for an ear problem and just casually mentioned to me that I have eagle syndrome. So […]

  • Surgery coming up
    by blossom on September 22, 2021

    Hi everyone. I have my pre opp appointment next week. Of course, now I’m starting to have doubts. Do I really need this? My symptoms are fairly well controlled with the medications, but when I’m not on them I feel pretty bad. Definitely having way more neck stiffness and headaches and I’ve only been off of them for three days. (I’ve stopped both flexeril and plavix this week since I am […]

  • Appointment with Dr.Hackman at UNC tomorrow!
    by Asumhannah on September 21, 2021

    Hey everyone!! I have my surgery consult with Dr.Hackman tomorrow and was wondering if anyone has suggestions as what to discuss.Sometimes when I go to the Doctors I swear its like I forget EVERYTHING lol so I’m writing a lot down and bringing lots of things with me as well as my CD although I’m sure he has the studies as well. 11 posts – 6 participants Read full topic

  • List of my favourite resources on YouTube to learn anatomy
    by vdm on September 21, 2021

    I’ll update this list if I remember/find more. These people are academics/practitioners/physiotherapists and so on, none of the “I tried this magnetic bracelet and it did miracles!” personae. Sam Webster https://www.youtube.com/channel/UCMRHZcgwdSE_9wbwcP8aRJw The Noted Anatomist The Noted Anatomist – YouTube Bob and Brad Physiotherapists […]

  • Current update from the newbie & my path
    by Tjmhawk01 on September 17, 2021

    First off, a kind Thank You to those who’ve offered such supportive kind words and who’ve shared a wealth of information either directly or indirectly just by sharing their story here. I have a consult on 10/14 with vascular surgeon, Dr Omlie to discuss my CT. He does the neck incision type of surgery which I’m preferring if offered given experiences here. I also have an appt with ENT Dr […]

  • CT Scan Scheduled for tomorrow!
    by beccaaaaa1 on September 16, 2021

    Finally got the call from the radiology department at my local hospital that I am authorized for the CT Scan w/o and with contrast. SO excited beyond words! Can anyone let me know what to expect with the CT scan? Never had one with or without contrast… 6 posts – 4 participants Read full topic