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
- Styloid Jugular Syndrome – Stylodectomy and C1 shaving-by Costantino on March 31, 2025
Hello everyone, it’s Costantino here. I was finally diagnosed with the jugular variant of Eagle Syndrome couple of weeks ago. I do promise I will give you a full narrative of my journey, deeply determined to raise the awareness for this condition and willing to help all of you. But first, I need your support! They suggest me to undergo stylodectomy + C1 shaving: I’m not worried for the […]
- New Here – Hello!by Kit_Cat on March 31, 2025
Hello! I am glad to have found this site and community! I hope everyone is doing mostly well today. Earlier this year, I finally discovered I have internal jugular vein compression. I am relieved in some aspects because I’ve been searching for answers trying to figure out what is wrong and up until this point, had been feeling dismissed and even began to wonder if everyone felt this way because […]
- Intro Post – Feeling Defeated/Downby Astaria on March 31, 2025
Hello all. I’ve been reading a lot of posts and info. This is a great forum. Today has been especially rough…symptom wise. Feel like I could use some support. I have yet to be diagnosed with anything having to do with my latest round of symptoms. Though many dentists have suggested that I do have TMJ issues. Back in 2019, one dentist told me he had never seen such a long styloid (of mine) […]
- Hello, Kyle again. Please advise on next steps. Stuck homeless in NorCalby KyleneedshelpNOW on March 27, 2025
Hello, my name is Kyle. I posted two years ago (or so) on this website. Things haven’t been good. I’m homeless now, most days I try and close my eyes and pretend none of this is happening. It started with a neck whiplash incident. That was July 2022. It’s been hard, I’ve lost my friends, family, job, housing. I am barked at constantly by homeless shelter staff, and have to hide away with […]
- IJV Compressionby Jules on March 27, 2025
Styloid compression of the IJV: Internal jugular vein stenosis associated with elongated styloid process: five case reports and literature review | BMC Neurology | Full Text 1 post – 1 participant Read full topic
- Finally some good newsby Skatkat on March 27, 2025
So I’ve been really struggling with my doctors surgery and getting appointments and follow ups and on top of that my symptoms got a lot worse at Christmas: Constant ringing in the left ear Pulsatile tinnitus in the left ear on and off all day Complete inability to swallow at all intermittently throughout the day and night Food going down the wrong way or getting stuck Stuffy head Last month I […]
- My imagesby markp on March 26, 2025
Hi I have been told I do not have jugular vein compression by the styloid. I have downloaded some images but I am pretty sure I have taken the wrong ones. Nevertheless I am posting them here to see what the forum experts think. I had a ct a/v. I can download more if needed. 18 posts – 5 participants Read full topic
- Before and after CTV images: bilateral removal & C1 decompression surgeryby Val7426 on March 26, 2025
Hi all, I wanted to share the before and after CTV images from JC’s surgery. Before CTV: September 2024 (more skeletal looking images) Surgery: December 2024 After CTV: March 2025 (more vessel like images) I would love to hear your thoughts on the images. The left side was the always worse, and the surgeon (Dr. Kamran) indicated he could not remove the styloid any closer to the skull base […]
- Battling ES Since the 1980’sby Isaiah_40_31 on March 25, 2025
Sandys_Mom21 20h I’m new everyone. I think I have been battling ES since the 1980’s or at least something related to it. I have been to so many doctors, PAs, CNPs, and whoever else is in the medical field. I’ve been poked, prodded, radiated and tested by so many medical people I’m sure that I glow. Every one of the providers has said we can’t find anything wrong except for a couple who […]
- Chat GPT scan uploadby Lemontree on March 22, 2025
I was really amazed uploading my CT scan, both sides to chat GPT, it came up with a lot of information about compression that is could see especially on the right side (now removed) . It even said how I’ve muscle tightness left neck scalenes and pec region that could be causing thorasic outlet symptoms that I have, I’m doing the exercises recommended by it now! AI is certainly scary but […]