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
- Pulsatile tinnitus not resolving post op?by Rynnie7 on January 6, 2025
New here and just looking for any bright spots or success stories post op for pulsatile tinnitus. While my surgery went well (4 weeks post op), my 24/7 pulsatile tinnitus is raging as ever. I have a dual diagnosis of IIH and ES. My jugular vein was compressed between my c4 and c6 vertebrae and post op most of my most debilitating symptoms are gone (migraines, pressure headaches, shortness of […]
- Surgery w/ Dr. Hackman Monday 1/6/25by Jstilley on January 5, 2025
Hello all! My name is Jenny. I’m from NC and have been fighting to find answers to some medical mysteries since at least 6/2022. I haven’t fought for nearly as long as some of you. Gosh I admire your stick-to-itiveness! I fought as hard as I could. After the first round of tests and imaging, they ruled out MS and essentially told me it was either psychological or CRPS. I kept fighting for […]
- (Recent) experiences with Dr. Axon?by Eyjajulie on January 4, 2025
Hello everyone. Does anyone have (preferably relatively recent) experience with Dr. Axon that they’d be willing to share about? I do not live in the UK but have a virtual consult scheduled for next week because getting things done in a timely fashion is not really working out in either my home country or current country of residence. Given the lack of language barrier and his reputation, I […]
- No evidence of Eagle on my last pano 2022by LittleBird on January 3, 2025
Hello! I had a recent CT (Nov 2024) that showed slightly elongated styloids and calcified ligaments. However, my most recent pano from 2022, showed no evidence of elongation or calcification. Can someone look at the images and let me know if: The image just does not include the styloids/ligaments Or, it should show it but whatever event caused the calcification/elongation must have taken place […]
- Thank you for the warm welcomeby Adele007 on January 3, 2025
Hi thank you for welcoming me to the amazing site its nice to know your not alone so my story is a long one and possibly self inflicted aswell, it all started in January this year with something not quite right at the top of my back/neck very anoying sort of pain so unfortunately i got a tennis ball and rubbed it up and down my upper back and neck to try and receive some of the tension in my […]
- Diagnose need Helpby Framussen on January 2, 2025
Hello from Kiel, Germany. I suspect that I have Eagle Syndrome. I have several symptoms and have been diagnosed with Thoracic Outlet Syndrome. This alone cost me 12 years during which doctors always treated me psychologically, and I was in psychiatry with pain in my hand, arm, and much more. Doctors say I should apply cream to my hand. Now, however, I have the diagnosis. Regarding the suspicion […]
- I think I have Eagles Syndrome – Image Help Requestedby Ravenquest on January 2, 2025
Hello Everyone! I am new here and I was only introduced to the possibility of Eagle’s Syndrome last week. My doctor thought I might have Thoracic outlet syndrome, but after posting my symptoms on the TOS facebook group, many suggested that my symptoms sound like ES. After looking at the symptoms of ES, it does line up very well. I am hoping to get officially diagnosed. I ended up going to the […]
- X-ray question and symptomsby jotanger2 on December 31, 2024
Hi everyone, I’m new to this forum and relieved to have found you all. A year ago, while sitting on an airplane, I suddenly couldn’t swallow. One minute I was eating fine and the next I couldn’t. My throat felt really sore and my tongue felt strange. I thought it was originally due to wildfire smoke (it has been bad in Seattle, where I’d been visiting), but that was just the start of what […]
- Need guidance ! Hyoid Boneby chiku248 on December 31, 2024
I am glad that I found this community. I am sharing my symptoms and evaluation below and I will appreciate any guidance I am a 32 years old man. Since few days I am having cold and a runny nose. And while self examining i found that ” My right lesser horn is feeling bigger than my left lesser horn in the Hyoid Bone” . It feels like a swelling and there is slight pain also .I checked with the […]
- Last Chance to Support Ben’s Friends in 2024 – Every Donation Counts!by Ben_Munoz on December 30, 2024
As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing short of inspiring, and it lays the foundation for the vital work Ben’s Friends will accomplish in 2025. While we haven’t quite reached our campaign goal yet, there is still time for you to help. 1) […]
