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
- Kyle update – Thinking about Hackman vs Fargenby KyleNeedsHelp on April 25, 2025
Greetings, my story starts three years ago with a neck whiplash injury. It’s been a long journey. I’ve lost my job, partner, friends and family. I now live in a homeless shelter because I can’t work. I have crippling brainfog, fatigue and sleep disturbance. When I lift my head I can hear liquid noises, like pressurized squirting. Dr.Osborne in California diagnosed me with IJV […]
- Suregry with TORSby Lemontree on April 24, 2025
Hi, Sorry if I’ve done the threads wrong. Just wanted to update everyone I’m getting left styloid out in 2 weeks here in Glasgow and my surgeon is using the TORS robot afterall, I was told it’s being kept only for cancer patients. Wish me luck. Finally getting the other one out, it’s really starting to cause heaps of issues so I’m very glad x 3 posts – 3 participants […]
- Dr Axon and Dr Sherifby Evey on April 24, 2025
Hello all I am new here and wondering if anyone has had surgery with Dr Axon (UK) or Dr Sherif (Ireland)? Any advice or experiences would be appreciated greatly. My CTA non positional shows no compression however my symptoms are all on turning my neck. The radiographer advised they don’t do positional scans. CBCT a year ago picked up bilateral styloids 4.2 and 4 and as my symptoms have become […]
- Living with eagle day by day…symptomsby Roeagle on April 22, 2025
Hello everyone — I’m really glad to be here. I’ll start with a short introduction because honestly, I’m not sure what’s the best way to share all of this. I’m 33 years old, and I live in Bucharest, Romania. A few months ago, I had the flu. After recovering from it, I began experiencing pain in my neck when swallowing. I went to an ENT specialist, but they told me “it’s all in my […]
- Eagle Syndrome in Minnesotaby NBAKER on April 22, 2025
Anyone successfully get diagnosed and treated for eagle syndrome in Minnesota recently? All I could find in a Facebook group is Dr. Hamlar and he manually fractures the styloid processes by pushing on them. Doesn’t seem like the right option for me, like where do the fragments go and what damage can they cause… 11 posts – 5 participants Read full topic
- Help with Imagingby IJVHelp on April 20, 2025
Hello, I was wondering if anyone could provide feedback on my imaging I uploaded. I am mostly concerned with my right jugular at this time. Could anyone help me identify the structure wrapped around the jugular at C1? I am familiar with the transverse process squishing my jugular, I was just curious about the other structures that are identifiable. Regards, Chris 3 posts – 3 […]
- Having surgery without being 100% sureby markp on April 20, 2025
Hi, I was wondering if anyone here had their surgery without being 100% sure their diagnosis was correct but you undertook the surgery because it was your last hope of reprieve from symptoms. 17 posts – 6 participants Read full topic
- Is it ES or TN? Newbie here!by Zilla on April 18, 2025
Hello all! I’m so glad I found this website, lot’s of knowledge here. I’ll try to keep this brief. I’m at the very beginning of this journey as I only learned of this syndrome 3 days ago when a coworker took a panorex on me and asked if I had it. I work in Dental education and embarrassing enough I didn’t know what she was talking about. Luckily she had recently attended a CE course […]
- Introduction, guidance, venting and moreby sudo on April 17, 2025
Good morning everyone, and thank you for having me here. While I hate that a site like this even needs to exist — filled with people who can relate to the same struggles — I’m grateful not to feel so alone. My name is Mike. I’m a farmer and rancher, and also a full-time IT Director. Over the past four years, I’ve had to sell most of my livestock and a lot of my land. My animals deserved […]
- Vascular surgeon opinionsby markp on April 16, 2025
Hello I consulted two vascular surgeons to get an opinion on my jugular vein compression and p tinnitus as the carotids are compressing the ijv between styloid and c1. You will have seen my previous posts. It has been a waste time seeing these guy as they seem spooked by the pt and have not seen much of it in their career. They cannot comment on the suitability of surgery and one told me don do […]
