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
- CTA/Angiography Approved – Help with Understanding Needed!by rachelle116 on November 20, 2024
Hey Everyone – Would appreciate some additional insight/answers to my remaining questions. Dr Constantino ordered a CTA (this will be my first). I tried to ask the lady that called to let me know this was approved but she didn’t know. Is the CTA similar to a venogram? I was told by Dr Constantino that my Soft Tissue Head and neck with contrast I had in June of 2023 was not good and the tech had […]
- Sudden vision symptoms – advice?by AS2005 on November 19, 2024
Hi all, I was doing really well for over a year after right side partial styloidectomy for Vascular Eagle Syndrome. Unfortunately, last week I experienced a sudden, piercing headache on the left side and after a night’s sleep, woke up with blurry vision on that same side. I went to the ER and had a CT scan (without dye – I’m allergic and it would take a few days to do the required protocol). […]
- Going for second surgery on throat – anatomy questionby Callmestar1 on November 19, 2024
Hi guys, I had a surgery to trim the back ends of my hyoid on both sides and my thyroid cartilage horns which were catching on eachother when swallowing. This did mostly get rid of the clicking in the throat, which actually wasn’t too bothersome for me anyway, but didn’t get rid of the restricted upward movement of the throat when swallowing, which is the main issue, besides other likely […]
- Become a Champion for Our Rare Disease Communityby Mod_support on November 19, 2024
Thank you for being an essential part of our Ben’s Friends community. Today, I want to invite you to take your support a step further by becoming a fundraiser for our “Friends Helping Friends” campaign. What does it mean to be a fundraiser? As a fundraiser, you create your own personal fundraising page and share it with your network. It’s a powerful way to amplify our message and reach […]
- New member from New Zealandby Denese on November 19, 2024
Hi everyone. Thank you for letting us join this forum/group. My wife Denese has set this up for me as I’m the one with ES but not the best on computers. We live in New Zealand and for the past six years have been suffering from what I can only describe as a nightmare. I have been told so many different things from a minor stroke, acid reflux, cervical strain in my neck causing mayofasiacl pain, […]
- Anyone else with nystagmus?by LittleBird on November 19, 2024
I searched and saw some posts where people mentioned nystagmus. It seems it might be acquired though? Made me wonder if Eagles was causing it for some people or if people with it are more prone to getting Eagles? I was born with congenital nystagmus and strabismus. My eyes shake, but the world doesn’t for me as I was born with it and brain adapted to it. But, I have had bouts of double vision […]
- 2nd styloidectomy scheduledby GiGi1965 on November 18, 2024
I had my left styloid removed intraorally on July 9. My right styloidectomy is scheduled for December 2. My left side dr. was able to do intraoral – the right side will have to be external because of the angle. This is again Dr. Tennant in Louisville. He is an ENT surgeon that specializes in cancer. I have not gone into detail about my various symptoms – the couple I did share, he didn’t […]
- Eagles and the Hyoid Bone?by LittleBird on November 18, 2024
Hi there! Is there any interaction between having Eagles and it affecting the hyoid bone? I feel like mine is either super tight on my neck and choking me or feels like there is swelling under my chin. It also feels like at times my neck wants to go one way and my trachea wants to go the other. I’ve had some people tell me my tongue tie (before my Eagles diagnosis) might be responsible. While […]
- Nucca/atlas adjustment after C1 shave? How long to wait?by Val7426 on November 17, 2024
For those who’ve had a C1 shave, how long did you wait before having Nucca/atlas adjustments? Were you concerned about having the procedure after having your transverse process shaved back? 1 post – 1 participant Read full topic
- Just had first CT but still no definitive answers!by Anon280107 on November 17, 2024
Hi all, new here and still trying to get answers. I want to tell you a little about my story so I will try and be as brief as I can lol. I am about 2 years into my journey. When I first started getting symptoms I was referred to a Neurologist who did the tests he thought was needed. I had a head and neck MRI which then led them to do a lumbar puncture. I was then diagnosed with IIH and Cervical […]