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

  • 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. 9 posts – 5 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… 5 posts – 3 participants Read full topic

  • Cervical instability, or spinal problems anyone?
    by Calebp on September 15, 2021

    Anyone here have cervical instability or and spinal problems. Or problems with their brain stem/spinal cord. I have cervical instability from years of my head moving forward to keep pressure off my styloid. And has caused spinal/brain stem issues and just wanted to know if anyone else has this problem? 5 posts – 3 participants Read full topic

  • Patterns between removing one or both?
    by Tjmhawk01 on September 15, 2021

    I see folks who’ve had some really awful symptoms and who’ve lived with this for years. To you, you’re all so brave and I’m so terribly sorry for your journey and pain. It would appear to me that this is highly under and misdiagnosed and probably more common yet less understood than we can imagine. As I navigate the gray zone between dealing with my own pain and an official diagnosis (the […]

  • Bilateral Intraoral post op 1mo
    by Dannib on September 15, 2021

    Hey guys! I am 1mo out of surgery and not doing as good as I had wished. I am having daily headaches that start at base of skull, jaw, ear and eye. It comes and goes and switches sides. Heat makes it worse. I know it’s only four weeks but still hard to deal with. I go to get remaining stitches out on the 20th of this month so I am hoping he tells me it’s normal and the headaches will go away. […]

  • New. Scared. Welcome advice (maybe a little comfort?)
    by Tjmhawk01 on September 14, 2021

    Hi all- May I ask a few questions of the experts here? Please bear with me as I navigate a long post: For a year and a half Ive have left-sided pain like muscles pulling in and around C1/C2 and like it’s pulling on my inner ear and tongue burning non-stop all day every day…no other symptoms- no burning in my neck or face, no headache, no stabbing pain, not feeling throat pain. Ive been […]

  • “Military neck” (loss of cervical lordosis) relation to Eagle’s – the missing link?
    by vdm on September 14, 2021

    So I have been suspecting this for a while already, but… Could someone with access to academia/medical articles share the following article please? Cervical Alignment Variations in Different Postures and Pred… : Spine According to some article referring to the one above, (Flat Neck Syndrome Causes and Treatment): [Because of the military neck, ] there can also be increased flexion (forward […]