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
- 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 9 posts – 3 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 […]
- Dr Osborne- Blue Cross Blue Shield Out of Network Waiver-2025by vcp02 on July 2, 2025
I know insurance limitations that make this entire process even more difficult. I was fortunate to receive care with Dr. Osborne on the 25th and 30th. Though he was considered out of network there are “Waivers” that can be requested. Through my husbands diligent efforts, we were surprisingly approved. BCBS will now pay for the surgery with in network benefits ( there may still be out of […]
- What are the chances of permanent deficits?by Eazy on July 2, 2025
Hi, my name is Igor. I am originally from Poland but currently live in the Netherlands. I have been struggling with what seemed to be post-concussion syndrome following an assault. It is true that I initially had a concussion. It took me 10 years for my symptoms to resolve to the point where I could function close to my old level. The symptoms were severe cognitive issues that took a long time to […]
- 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 […]