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
- New here, here’s my ES storyby SyndiMac on December 5, 2024
I’m 35, female, just outside of Portland, OR. I went to the ER in April 2024 for a stabbing pain on one side of my throat that prompted intense coughing that left me breathless and seeing stars. I had three of these episodes in 24 hours and ran to the ER where I felt like I was laughed out of the room because I told them I smoke marijuana regularly and I have NEVER- in 15 years of smoking ever […]
- Questions about post op recovery after styloidectomyby mbista on December 4, 2024
I’m now 15 days post op after right styloidectomy. Doing well overall with no major complications. Just hit a rough patch last weekend with sore throat on right side and soreness of the jaw. Ive been icing the area 2 or 3 times a day and eating soft food. I had been on tylenol and ibuprofen but switched to a medrol dose pack 5 days ago. Many of you said its up and down for a few months with […]
- This Giving Tuesday, Make Sure No One Faces Rare Disease Aloneby Ben_Munoz on December 2, 2024
As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and connection. Our mission is critical: to ensure that no one faces a rare disease alone. Thanks to donors like you, we have recently: Redesigned our community sites for easier navigation Launched the […]
- Vagus Nerve Affecting The Digestive Tractby Jules on December 2, 2024
Thanks to @Bowser who found this article! Vagoglossopharyngeal neuralgia revealed through predominant digestive vagal manifestations. Case report and literature review – PubMed 3 posts – 2 participants Read full topic
- What am I looking at here?by Maddy on November 30, 2024
Is the styloid touching anything etc? I don’t see a specialist for a hot minute. 12 posts – 5 participants Read full topic
- Anxiety caused by eagle?by Maddy on November 30, 2024
Has your eagle syndrome caused your anxiety to sky rocket? Like in terms of it bothering your vagus nerve? My anxiety has gotten way worse over the past year and I’m wondering if the eagle syndrome is the cause. 2 posts – 2 participants Read full topic
- I had my surgery!by Rhysyboy92 on November 30, 2024
Hello everyone from Perth Australia! I’d just like to let you know after 2 years I finally had the right styloid removed ! Yesterday afternoon I went under around 3pm – via intraoral, and must admit has not been as painful as my tonsillectomy. Stiff jaw when opening and not much pain while swallowing after 36 hours Although I am currently on Panadol neurofen and oxycodone I feel like my […]
- Post – surgery journalby virenlondon on November 29, 2024
So I thought I would create a new topic for my post op journal. Just briefly explaining my past: a trauma from an elbow to the throat while playing basketball Symptoms after the trauma were that talking caused excruciating pain, and any physical exertion (with the exception of running) also caused severe pain. Important to note I could actually talk, but it caused so much pain, I just didn’t […]
- IJV compression?by Skatkat on November 29, 2024
These are the only images I have, I’m waiting for a CT with contrast. These images are from my CT without contrast. Does anyone know of this shows compression? Or do I need to wait for the contrast scan? 3 posts – 3 participants Read full topic
- Can you feel it?by Maddy on November 29, 2024
Can anyone feels theirs? Asking because I can feel mine rubbing on either my jaw or something else and it makes a clicking sound/sensation when I swallow. Also, if this something that is progressive? Like of not taken care of continues to get worse or longer etc? 4 posts – 4 participants Read full topic
