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
- One year update left side styloidectomy with Dr. Hackmanby Leah on November 5, 2024
Wendy asked how I was doing and am posting this to update the group. I am feeling much better, but with interventions. I am seeing a pain management doctor for occipital neuralgia type pain. Have had (3) bilateral ‘trigger point’ injections, twice at the base of the skull (a little maybe 1.5″ above) and last time in upper cervical. They used lidocaine and prednisone and was immensely […]
- Pentoxifylline for tinnitus?by Nikkimm on November 5, 2024
Has anyone used pentoxifylline (brand name Trental) for tinnitus? How did it help? I have had bilateral styloidectomies and my tinnitus is still very strong. My surgeon said we can discuss this med at my next post op visit as it can be successful. I’m not having luck finding stories of its use for tinnitus. Thank you 4 posts – 4 participants Read full topic
- Post-op: weekly movement & stretch recommendation, and physio (?)by Val7426 on November 4, 2024
For the life of me, I couldn’t find a specific answer to this using the search. For those who had an external styloidectomy, what were your post-op movement instructions? Were you told to look side-to-side, attempt neck bends (ear to shoulder), chin tucks? How/when did you transition from one set of movements to the next? When did you start massaging your scar? Were you instructed to do physio? […]
- ES or Thyroid nodulesby Crisbr78 on November 4, 2024
Due to heterogeneity in the thyroid, found in my neck CT, I underwent an ultrasound where 3 nodules appeared in the thyroid. One with 2.1cm, another with 1.8 and the last with 0.6. I have already been diagnosed with calcified styloid, bilateral, measuring the largest 4cm. I doubt whether my symptoms (dysphonia, dysphagia, odynophagia, feeling of something stuck in the throat) are not caused by […]
- A Canadian’s Journey: VES Surgery in Türkiye Dec. 10by Val7426 on November 3, 2024
Hi all, First and foremost, THANK YOU to everyone who provided advice and support. @Isaiah_40_31, your advice and compassion has been a guiding light since the start of JC’s diagnosis. For that, thank you from the bottom of my heart. I’m going to write everything into this post, and update it going forward. I hope it will act as a guide for those who feel they cannot get support in their own […]
- PAin on Phonation, physical exertion, and my Storyby virenlondon on November 3, 2024
Hello everyone, First of all, thank you to the people responsible for this forum, as I feel I have been alone for the last 4 years. I wanted to share my story here, as I’ve been dealing with intense throat pain for nearly four years and finally may potentially have the answer. Its a long post, but essentially, I wanted to know if anyone experienced pain on phonation or physical exertion. If so, […]
- New member from NZby BraveKat on November 2, 2024
Hi all! Thank you for accepting me into this incredible community and resource. Disclaimer: this is long and my brain fog/inability to focus has probably led to many typing mistakes. I am an almost 40 year old who has been experiencing pain on my left upper body for over 10 years as well as a host of what I had thought were odd unrelated symptoms. Prior to this I have had ongoing reflux and […]
- Dr. Hepworth Surgery Yesterday – Post op Report Todayby Isaiah_40_31 on October 31, 2024
First I want to thank all of you for your prayers, healing wishes, & for thinking of me during my surgery yesterday. I know many of you have been following my IJV compression story. My surgery with Dr. Hepworth yesterday (10/30/24) went extremely well. I’m feeling much better than I expected this morning probably due to Percocet, ice, & a course of dexamethasone (steroid). Dr. Hepworth […]
- Lidocaine Popsby JugularEagle on October 30, 2024
I have lidocaine patches that I use on other parts of my body. I tried cutting them and placing along my jaw but I can’t get them to stay on. I did not know there was such a thing as lidocaine pops made at compounding pharmacies. Has anyone tried one. I assume insurance isn’t going to pay for it. I am not even sure I could get a script for one. It might provide relief when pain is really […]
- Weird Symptom? Pseudo Obstruction of the Bowelby ectocake on October 30, 2024
Hi everyone! Checking in with a potential weird symptom. My searches didn’t yield many results but I keep having what appears to be pseudo obstructions of my small bowel. I know Dr. Hackman said some have had gastro intestinal related issues due to the vagus nerve. Has anyone had severe gastrointestinal issues relieved from surgery? Or seen an research they want to share I’d be interested. […]
