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
- Intra oral surgeryby Max330 on August 8, 2025
Hi all, I have opted for surgery after years and years of symptoms in the hope this is the root cause and I can start to feel like myself again. I’ve not had an official diagnosis of eagles because they don’t seem to know much about it here in Scotland. But my ENT consultant has said my elongated styloid process is the cause of a few of my symptoms and not all, even although on here you all […]
- Dentist told me I have ES and I’m stunnedby Morechoiriel on August 8, 2025
Hello – firstly thanks for taking the time to read this! I am Ashley from Michigan. I visited a new dentist a couple days ago and he told me I have ES. After looking into this condition I am STUNNED. This could potentially explain a lot of problems I’ve had over the years that have been routinely dismissed by doctors of almost every specialty!! Here’s my story/symptoms that I think might be […]
- 3D Scans – Recently diagnosedby Girgz on August 5, 2025
Hi all! I was diagnosed yesterday by an oral surgeon after a CT scan. I’ve attached them for y’all’s thoughts. I have been have random neck pain when moving my neck, chest pain that is intense and comes for 20 seconds and leaves, jaw pain similar to TMJ symptoms, night sweats, and more. After finally have an oral surgeon take me seriously, he has recommended me to Asheville ENT. Not sure if […]
- Impatiently waiting after CTVby mountangurl on August 5, 2025
Hello all! I recently joined this group after learning this could be a possible part of my diagnostic and symptom constellation. I have hEDS and CCI with two prior cervical fusions front and back c4-6 and c3-6. I will need an upper cervical fusion however my neurosurgeon in New York referred me to Costantino after noting the possibility of jugular vein compression based on imaging and symptoms […]
- CT-V Report Says Styloidogenic Compression of Internal Jugular Veins – Help Understanding Imagesby PebblesAnn on August 4, 2025
Hi everyone. I have a very complicated medical history, that includes diagnosed rare autoimmune and immune deficiency syndromes. But I have had increasing ear and neurological issues, which although previously attributed to the autoimmune disease and somewhat aiding by corticosteroids, never really fit in the picture entirely. In particular, I have severe tinnitus, pulsatile tinnitus, head […]
- Possibly misdiagnosed, where to go from here?by blue14 on August 3, 2025
ive had issues for a few years since a tonsillectomy when i was 15 in 2018. a year after my surgery my symptoms started. at first i had vision issues like flashing lights and hazy vision with large black floaters and severe vertigo. as the years when on things got a bit better until right before my thyroidectomy in fall of 2023 when i started having ice pick pains in the side of my neck. Over the […]
- Possible misdiagnosis and looking for information and helpby blue14 on August 2, 2025
(topic deleted by author) 3 posts – 3 participants Read full topic
- Help me understand what is wrong with me, pleaseby Jete on August 2, 2025
Hello. Thank you for adding me to this site. I don’t know what’s wrong with me yet. I have been dealing with symptoms for about 6-7 years. But now for last 6 months I am in agony because I get bad vertigo. It’s getting progressively worse. Everything started with shooting pain in my right ear. Now I am having pain that wakes me up in the middle of the night. Vertigo is triggered with […]
- Surgery Tuesday Aug 5thby Hopefulhermit on August 1, 2025
Hi Everyone, I am scheduled for styloid resection this Tuesday Aug 5th for the right side and Aug 12th for the left side with Dr. Osborne. I had consults with Osborne and Hepworth, and although Hepworth maintains that styloid resection alone is not enough and recommends decompression, I have decided to go with Dr. Osborne’s more conservative/ minimalist approach; the main reasons being that his […]
- Got diagnosed with vascular Eagle syndrome, both relieved and scared!by aelsaman on July 30, 2025
I am both relieved and scared. Being able to find the right diagnosis for my symptoms and understand what causes my body to suffer all those years is a relief, believe me . But also learning about different surgical approaches and that only a few doctors worldwide who can successfully perform this kind of surgery scares me a lot as well. First of all, I am very grateful to all the members in […]
