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
- Charging symptoms and reassurance neededby Adele007 on February 17, 2025
Hi Everyone Im waiting for surgery its on the 28th but in this past couple of days iv gotten alot worse and the clicking and clacking have turned to thuds every time i swollow, im getting alot of calcification coming out from my mouth ehivh im spitting out every 30 seconds and im finding it hard to swollowing and can feel with in my body the styloild going up and down my neck everytime i swollow, […]
- Operación Eagle en Españaby Wilow on February 16, 2025
Hola, me gustaría conocer si alguien se ha operado en España. Qué doctor lo ha operado y si ha notado mejoría.Tambien me han hablado de un cirujano en Polonia.Alguien que me pueda decir algo? Gracias Translation: Hello, I would like to know if anyone has had surgery in Spain. Which doctor has operated on them and if they have noticed any improvement. I have also heard of a surgeon in Poland. […]
- New Member, Here’s my story and were I’m atby Disabled_Inventor on February 16, 2025
Hi All, Not really sure where to start writing this but really glad I found this forum. This is a long post because its my first and don’t really have anyone to talk to about what I’m going through, and I’ve spent some time reading posts and seems there are alot of well educated and kind people here. I am just going to lay out my situation, I wish there was a TLDR I have struggled with […]
- Questions about carotid sheathby ClearSky on February 14, 2025
Hello all, I had a few questions about the carotid sheath that are probably going to seem a bit ridiculous – I’m still learning, so apologies in advance! From my understanding, ES/VES can be caused by the styloid process or a hardened stylohyoid ligament pressing down on structures within the neck. This can include the jugular vein, carodid artery and the vagus nerve. I’ve read that the […]
- Not sure what surgery to opt forby Lemontree on February 13, 2025
Hi, Hope everyone is going well. I’m getting surgery on my left side in around 4-6 months. He’s not allowed to use the TORS robot this time around (I had right out intra oral last year by Tom Milner in Glasgow) – so I have a choice for what surgery to go for, I can’t remember what’s best, I’m sure I read about this before. I’m nervous he’s now not using the robot lol! I’ve also […]
- ES Story, bilateral, IJV Compressionby TomTomson on February 13, 2025
Hello, after suffering for roughly 20 years from this insanity I finally got a diagnosis and had surgery last week. I’ll share my story and can also give additional updates and information if anyone is interested. Symptoms: -strange feelings in my upper neck and head area, constant pressure, pain and feeling squeezed inside my head and other really unpleasant feelings -constant dizziness, the […]
- Dr. Appt with Keith Saleby EMB2004 on February 13, 2025
Hello everyone, I thought I’d let you know that I finally have an appointment with one of the specialists in April! I’m going to get checked out, and if he also recommends surgery I will probably travel out of state for a more experienced doctor with surgery. I am unsure if I should call again and ask if he wants my CT results, as they did not ask but I feel it would be beneficial. I only […]
- 4 months after surgery bilateral styloidrectomyby KCarey on February 11, 2025
This is about what’s on my mind and how I’m feeling 4 months post op. I have questions so I can see if I’m in a normal place or if I should be better. My doctor (Dr Hackman) said I should be able to open my mouth by now. He suggested stretching it wide as I can a few times a day. I’ve been doing it for 2 weeks with no improvement. I can barely open two finger widths, just enough to get a […]
- My Eagle Syndrome Storyby THughes on February 10, 2025
I am a 58 year old male. I have/had been suffering from Neurocardiogenic Syncope (NCS), high blood pressure, cervical and lumbar pain, cervical spondylosis with myelopathy, along with Sleep Related Rhythmic Movement Disorder (SRRMD) since birth. My conditions presented themselves over the years with the following symptoms: Inability to sleep or get a restful night sleep Headaches Ringing in my […]
- Dr Mannion (Vanderbilt) Visit Updateby Pamela on February 10, 2025
Just an update bc I know people are always looking for info on drs. I saw Dr Mannion at Vanderbilt today and feel like it was a really good visit. He was kind, informative, and extremely patient. I was also able to see him within a week of my referral, but I am already a patient at Vanderbilt due to having long COVID since 2020, so that might have expedited things. Anyway, I was very concerned […]