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.
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Latest Discussions
- Dr. Jakub Bargiel: Poland, new studyby Valeriet7426 on October 29, 2024
Thought some people might want to read this new study by Dr. Jakub Bargiel, who is situated in Krakow, Poland. This doctor is using a “minimally invasive” technique, and I won’t comment much on that since I’m nowhere near qualified. What caught my eye was the sheer number of procedures he completed between 2021-2023 (84 to be precise) and then the outcomes. We know through here that […]
- Patients of hepworth that had calcified ligaments and small styloids and went through surgeryby Eli on October 29, 2024
Hola community .I hope you are able to provide some guidance. its still unclear to me how dr hep addresses this and i understand that every case is different, but would be really helpful if someone that had a succesful story could wouldnt mind sharing what was done ,. does the calcified ligaments stay or get removed? do you go in w/ a very specific plan before surgery and did it radically […]
- Posterior belly of the digastric muscle IJV compression research articleby IJVHelp on October 27, 2024
Does anyone have a research article that they would be able to share that talks about the digastric muscle compressing the IJV? 4 posts – 3 participants Read full topic
- Surgery with Dr Hepworth November 11thby jrodefeld on October 24, 2024
I’m very excited that my surgery with Dr Hepworth is finally coming up in about two and a half weeks! It can’t come soon enough given how poorly I’m functioning but very hopeful this will solve most of my problems. What’s planned: Right styloidectomy and jugular vein decompression Ethmoidectomy to look for and repair CSF leaks Left femoral and left renal vein catheter venograms to […]
- Advice on Surgeon Selection after Hui Consultby dreamliner on October 24, 2024
Hi all, had my consultation with Dr. Hui a few weeks ago & was happy to finally get some straightforward answers. I was offered surgery next year as part of the Hawaii quarterly meeting of Hepworth/Theler/Zhang, but that would require substantial travel. To Summarize: 26 year old M, symptoms since age 21. Hui: Imaging & Tests sufficient to confidently recommend IJV decompression. Mod-Sev […]
- Has anyone here used Dr Athos Patsalides in NY?by mdeltieure on October 23, 2024
I’m looking into perhaps going o Dr Patsalides in NY, has anyone gone to him? If so, what has your experience been? 7 posts – 4 participants Read full topic
- Jugular constriction or notby Lisabeth1555 on October 23, 2024
Hey there, I’ve just got done with my second appointment with Dr Costantino here in NYC. My imaging doesn’t appear to show jugular constriction. I’m curious because he implied that doesn’t make me a candidate for surgery. So all the other symptoms are not enough to qualify for surgery? Very disheartening. He wants me to buy a ($200) ‘Q collar’ and see another doctor about a jugular […]
- Surgery updateby Millymay on October 22, 2024
Been 4 months since my left side surgery, recovery was slow, but I finally have full use of my left shoulder, a lot of my symptoms have improved, no more vertigo, I still have a lot of head compression at night and numbness in my chin which may not go away, Dr Costantino has agreed to do the right side January 20th as you can see by my images left side is fully open, right side sucks butt, the […]
- Eye problemsby Swent39 on October 22, 2024
Has anyone here developed Horners syndrome from their Eagles syndrome. I had a TIA like event that caused eye drooping about 3 weeks (did not find stroke or TIA) and ever since then my eye intermittently gets slightly droopy and bloods shot and burns. I also have eye pain and pressure in that eye on my bad side. It got pretty obvious today so i took a picture 9 posts – 4 […]
- 3 weeks post op, going backwardsby JSwing on October 22, 2024
Some history, I had bilateral styloidectomy last December with no changes. Three weeks ago I had c1 shave and styloidectomy with Hepworth. First ten days were rough, waking up with panic and horrible fatigue, but I had a week of great energy and calm. Yesterday and today I’m back to no energy and the anxiety is right under the surface. Does that indicate ijv went back to shut? I got my hopes up […]
