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
- Post Op- Dr Ryan Osborne- Current recovery-WHAT I HAVE LEARNED***by vcp02 on July 1, 2025
*** VERY LONG READ- WHAT IVE LEARNED**** MOST IMPORANT PART I have been on the forum non-stop. Since only discovering my diagnosis ~ 3 weeks ago, after I confirmed my diagnosis with Dr. Middleton in Florida. I keep contemplating on when and what to post. But given my recent conversation with Wendy ( whom I cannot thank enough for her support ) I figured I’d start here. ((( I plan on adding […]
- CranioCervical Instability (CCI) and head tiltingby jobby99 on July 1, 2025
I was just wondering if anyone went down the CCI path to try and find out why their neck doesn’t like lifting their head. My latest MRI of neck didn’t show anything besides straightening of the curve of neck. My head wants to lean backwards generally and muscles to tilt it back to level are very weak. I think my body has learned that chin tucks are bad news for the compressive structures […]
- 3d slicer images for review – 46 mm left and 40 mm right styloidsby jobby99 on June 30, 2025
Link to dicomlibrary viewer with all images: https://www.dicomlibrary.com/meddream/?study=1.3.6.1.4.1.44316.6.102.1.2025063010754937.579840342906845729809 I played around with 3d slicer and found that it could do some of the images easily and others labeled as ending in “topogram” with great difficulty. I assume the non contrast images were labeled correctly as sagital, coronal, and ap and […]
- Update on my case June 2025by Disabled_Inventor on June 28, 2025
Hello everyone, I am happy to report that I have a treatment plan for my eagles and internal jugular vein compression. The sole reason for this is because of this site and the mods & members who all make this place such a valuable resource. Quick summary: I was diagnosed with EA and IJV compression by Dr. Constantino in NY and his plan is to do 1 side styloidectomy and decompression at a time […]
- New Member with a long story – Eagle?by RB709 on June 27, 2025
Hi there. Thanks for all the good information on this forum – I have been lurking for quite a while. I am a 52 year old male living in eastern Canada who, in late 2015/early 2016 became ‘ill’ with a full suite of very different symptoms and have only recently been tuned in to the possibility that my neck may be the cause. Prior to this, never had any health issues other than the odd sport […]
- My symptoms don’t fully align. What do you think?by Yuyo on June 27, 2025
Hello all! I hope you are well. My name is Yuyo, 34yo male and this is my story that took me to this forum. 5-4 years ago I started developing chronic fatigue. It started worse in the mornings, waking up lethargic and unrefreshed, but it would get better in a couple of hours. Drinks and parties in the evenings also became less often as I started to have less and less energy by the end of each […]
- 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 […]
