Finding support for Eagle Syndrome? Connect with people like you.

A welcome banner for Living With Eagle Syndrome community featuring a hopeful patient and caregiver

Living with Eagle is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. 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

  • Post Styloidectomy Advice
    by BabzieAM on June 16, 2024

    I had my left styloid removed on 7th June and wasn’t given much post surgery advice. I was just wondering if anyone can please advise on when I can possibly expect to be able to restart the below: Cardio exercise & weight training (obviously restarting slowly) Neck stretches, Pilates, yoga General chiropractic care – adjustments to the thoracic spine/hip area Chiropractic neck […]

  • Getting tired of my body trying to murder me…..CT Attached
    by SoaringEagle on June 16, 2024

    Hey fellow skull dagger friends, Just wanted to say I am new and probably in the same boat as most of you. I seen around 10 doctors ranging from pcp, neurosurgeons, orthosurgeons, rheumatologist, NPs, pain specialists and my problem was missed for about 3 years now with symptom list growing all the time. I am not 100 percent sure my problem is eagles syndrome as im missing a few symptoms and have […]

  • How do most people pay for the surgery?
    by SoaringEagle on June 16, 2024

    Do most people pay cash which im assuming is really expensive or is a it a hassle to use insurance if using an out of state doctor? I see 2 head and neck ent oral surgeons next week but im considering going out of state to the surgeons that specialize in this condition as my condition is quite complicated, styloid and c1 compression on one side and the other side it looks to be compressed by the […]

  • Plavix/Aspirin- antiplatelet medications UK
    by PatientD on June 15, 2024

    Hello I know Mr Hepworth spoke about his use of Plavix (antiplatelet medicine) to help VES patients. This drug proved hard to obtain in UK as it is not a known treatment for VES here. In last month I started taking low dose Aspirin 75mg daily (coated version so protects stomach) and my GP confirmed this is an antiplatelet medicine also (like Plavix). As it is easy to buy low dose Aspirin in the […]

  • Dr Fargen
    by pk5 on June 14, 2024

    Bilateral styloidectomy completed by Dr Hackman on 2/5/24 but symptoms still remain. I think we also needed jugular decompression but Dr Hackman doesn’t do those. Does Dr. Fargen offer jugular decompression surgery and C1 shave? Or does he just do the testing to find the stenosis? I’m just trying to figure out if he can do the testing and surgery or just the testing. Thank you for helping me […]

  • Post Op Update – Surgery w/ Dr. Osborne
    by Isaiah_40_31 on June 12, 2024

    From @nbjenn – I just had my surgery with Dr Osborne in LA. He is such a great doctor with a wonderful team. When he started the surgery my blood pressure would tank then it would go sky high a few times but they finally got it under control and when he opened me up he saw adhesions wrapped around my cranial nerves and jugular vein tight as can be. He had to free them and it immediately make my […]

  • GI studies
    by Eli on June 12, 2024

    Been told by primary care since having GI issues to rule everything out before any surgery to get an esophageal manometry and a ph impedance test. Unsure if I can tolerate it since even endoscopies have caused irritation that doesnt subside(have calcified ligaments ) Anyone has done this and find it necessary/ or provided helpful info? I would like to know how the motility of my esophagus works […]

  • 1 Week Post Surgery Update
    by vap on June 11, 2024

    Hello all, I just wanted to provide an update regarding my surgery with Drs. Costantino & Tobias on 6/3/24. I am currently at home in VA continuing to recover. According to Dr. C., my surgery was a challenging one because my spinal accessory nerve was really wrapped up along my IJV. The surgery took twice as long as it was expected to take (my family started getting a little nervous in the […]

  • CT scans what is the styloid through
    by Gods_blessing on June 10, 2024

    CT scans what is the styloid through 16 posts – 3 participants Read full topic

  • Second surgery with Hackman upcoming!
    by slekeille on June 10, 2024

    Hey y’all! I know it’s been a long time since I was active (I believe I posted my update to my January right-sided styloidectomy in March). Some of you might’ve noticed me commenting on other posts in the last several days — I am trying to be somewhat active here, again. I know that many of you are invested in my journey with Eagles’s as much as I am yours. That’s why I wanted to be […]