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.
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
- Strange overnight symptoms – anyone else?by Gina1961 on July 12, 2025
Hello all – I’m just wondering if anyone else has these weird symptoms? I have just finished prolo for my CCI and it’s pretty much resolved. I flew home on an overnight flight and the tinnitus woke me as usual (with no head pain) – I was seated. I noticed it was definitely louder when it woke me as I could hear it clearly over the aeroplane noise – it had been much quieter earlier. I’ve […]
- What do y’all think about this panoramic xray? Is it Eagle based on your experience?by Jbob on July 11, 2025
I’m waiting for my appointment with an eagle specialist. I am wanting to be prepared for what I am going to find out when I finally get to see her. As you all know, the wait is long, and it would help just to know if one actually has the diagnosis of Eagle Syndrome. I finally found a dentist familiar with eagle and was able to get a panoramic xray. He said that my left styloid looks like it […]
- Prendisoloneby markp on July 9, 2025
Hello, did anyone who had surgery take Prendisolone after the surgery and if so what amounts did you take? Thanks 11 posts – 4 participants Read full topic
- Newly diagnosed and scaredby Samk13 on July 9, 2025
Hello all, I was diagnosed yesterday after a hospital stay for a few days with severe trouble swallowing. I’ve had several stroke like hospital admissions with Bell’s palsy like symptoms and no actual help except for finally a diagnosis. Because my symptoms resemble stroke like things, I quickly researched and found dr Osborne. I meet with him on Thursday. Is there anything that can actually […]
- Vascular eagle syndromeby Mastiff on July 9, 2025
Hi guys I am a 25 year old male,medschool graduate from India Very much greatfull for this forum I was diagnosed with severe left IJV compression on this Monday I did an atlas orthogonal adjustment and 3d imaging,but i am not finding relief and having neck pain after that The definitive management would be styloidectomy I have uploaded the images of my scan Hoping that the members will have a […]
- Update, finally seen at WashUby njess on July 8, 2025
I finally met with Dr. Puram at WashU last Monday. I also had another CTA done. I was appreciative of his straightforward response and his willingness to listen to my health journey so far. He gave it to me straight and said he’s not sure if removal of the left styloid would relieve my symptoms but was willing to break it off. At the time of the appointment only he had reviewed my CTA. In the […]
- Caffeine question: Anyone improve temporarily?by StyloidC1x2 on July 7, 2025
Hi Everyone, Before creating this post, I tried using the search tool on “caffeine”. The results are almost entirely about avoiding caffeine. I’ve been testing caffeine and it temporarily helped. Has anyone experienced temporary relief from Eagles symptoms, particularly headache pain and orthostatic intolerance, from a high dose of caffeine, such as 200mg? (And equally important: rebound […]
- Seattle, need ENT/surgeonby MyStylishStyloid on July 6, 2025
Hi. Eagle s/p R sided tonsillectomy and R partial styloidectomy (intraoral) in Feb 2024 but Dr. was not experienced at this approach. only removed 5mm. Still in pain a year and a half later. Had some success with in-office steroid/lido injection into stylohyoid area but my surgeon won’t operate again and didn’t refer me for further testing. I’ve since seen pain doc and have R medial branch […]
- Eagle syndromeby madhavshrma on July 4, 2025
I’m diagnosed with elongated styloid process of 42mm and 30mm on left…i’m feeling dizzy,brain fog,vertigo and lack of concentration.Is this symtom of eagle or i have any other health issue like C1,C2 INSTABILITY 39 posts – 4 participants Read full topic
- Advice on LEFT sided pain/swelling that started 12+months post styloid removalby maryscooter on July 3, 2025
Looking for some general advice on my situation and imaging posted below. To date I’ve had 3 surgeries: Surgery #1 2023: Bilateral styloidectomy to address bilateral Eagle Syndrome. At the time my LEFT side was not experiencing any symptoms/issues but Kaiser in CA does bilateral by default and I was not educated enough at the time to push back on this. All of my symptoms were on my RIGHT which […]