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
- Does anyone feel it’s getting more difficult to chase answers?by stuuke on June 25, 2025
It seems over the last year the social media posts, YouTube ads and videos have really increased discussing solutions for brain fog. the vagus nerve, neck instability and other symptoms we tend to have. It all sounds good and people desperate for help will try anything. With all of these people cashing in on our symptoms with different stretching techniques, devices or programs it seems like […]
- No Eagle – feeling lostby AugustWest94 on June 25, 2025
All – an update to my original post. I had a CT scan without contrast and unfortunately, they did not find any elongation or calcification of the styloids. I was shocked because my symptoms lined up with eagle to a T, and I can literally feel (what I thought were) the styloids on the side of my neck away from the jaw line. My question is – could I still have some sort of compression/weirdly […]
- Sharing my journey 🥲by Adro on June 25, 2025
Hey everyone, just wanted to share a quick update. I recently had updated imaging done, which confirmed that my styloid processes are 6.5 cm on both sides—so it’s pretty severe bilateral Eagle Syndrome. I’ve been dealing with symptoms like intense, radiating pain in my throat, jaw, and neck, chronic debilitating migraines that can last for weeks, dizziness, facial numbness, difficulty […]
- My Story Thus Far (Advice/Encouragement Appreciated)by linkncb99 on June 25, 2025
Back in February, despite being perfectly healthy (to the best of my knowledge), I woke up one morning and, seemingly out of nowhere, began suffering from a number of incredibly distressing neurological symptoms (light sensitivity, visual snow, floaters, ear ringing, DPDR, etc.), intense head pressure (still here now – presents as constant throbbing on back left side of head), and persistent […]
- GPT summarized how I’ve felt since my neck injury perfectlyby KyleNeedsHelp on June 25, 2025
Had bilateral styloidectomy for VES a couple weeks ago. Since then I’ve felt worse and am wondering if it’s CCI which I can’t afford to treat. This is how I feel. I post this for other’s experiencing the hell I have, and in memory of who I used to be: “That’s the most heartbreaking part of all this. You’re not speaking as Kyle — you’re speaking for him. Like a soul on watch […]
- I have IJV surgery coming up with Dr. Constantino and Tobias and I am second guessing myselfby Dave on June 24, 2025
Hello, Just wondering if there is anyone out who had ES IJV surgery and got rid of these kinds of symptoms noted below? For those that had it with these kinds of symptoms and surgery, would you do it again if you had the choice? I am questioning whether I am thinking objectively about this or whether I am just being desperate…I need someone to tell me this can actually makes things better […]
- A 3 year roller coasterby Lyndsay on June 24, 2025
Greetings to all… I have received such a kind welcome, read several posts and guides, and am learning so much already. I have hopefully captured the most relevant 3d images from my recent CTA with venogram protocol using Radiant and will share those here. My symptoms began over 3 years ago and I have been on quite the roller coaster since. I have received multiple diagnoses. There are still […]
- May be Eagles… may be [___________] ?!by annaleighm on June 24, 2025
I’m not sure where to begin here. I’m a year into this journey. Began (Summer ‘24) with random onsets of loud ringing, followed by feeling dizzy, losing balance and (sometimes) falling over. Then for the next few hours I’d obviously feel nauseous. Then the onset of the worst ear pain you can imagine. Of course then headaches. All on the left side. Left Eye pain/sensitive to light. Pain in […]
- New to eagle syndrome (undiagnosed) do you’ll suggest I see an ENT?by Mpasman on June 24, 2025
Hi all! New to this world after a CT scan today with a tmj specialist. I thought I was struggling with tmj but my joint looks great. But they did note ossification of my stylohyoid ligaments Have had symptoms for three years from clenching. Original onset was face pain, eye pressure, swollen lymph node by ear, ear pain and tinnitus. Steroids and night guard helped calm a lot of those symptoms. […]
- 2 Weeks Post Styloidectomy and IJV Decompressionby pauld1635 on June 24, 2025
Hi All, I wanted to share a quick follow-up since my surgery with Dr. Nakaji, which was just over two weeks ago on June 9th. To be honest, recovery has been a bit of a rollercoaster. The first week was rough—I was pretty swollen and couldn’t get comfortable no matter what I did. The second week was a noticeable improvement, and for a while I felt like maybe I was starting to experience some […]
