Welcome Members!

Welcome to Living with Eagle Community!

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.

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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

  • Question about work accommodations
    by AS2005 on December 6, 2022

    I am newly diagnosed with ES, just last week. I have a very stressful job and am wondering if any of your doctors recommended any work accommodations? I am off til January right now for a research leave and the holidays. I have noticed that computer work for long stretches worsens the neck pain, but it’s improved a lot with a sit/stand desk (which I got for a lower back injury). Any advice […]

  • New diagnosis of ES in Toronto area
    by AS2005 on December 5, 2022

    Thank you all for creating this space. I was just diagnosed late last week with bilateral ES. The styloids are each more than 4cm long. I am kind of in shock and starting to do more research and try to find specialists in my area (the Canada subgroup has been helpful!). I had a terrible earache and pain very localized to one spot in my tonsil/throat for about three months that caused me to go to […]

  • Possible VES – questions
    by NRuflove on December 5, 2022

    Hi I’ve been lurking for a week or so reading and absorbing. I know you’re all very busy helping people with diagnosed ES, so I’ll get straight to the point with my questions: There’s a possibility I have ES (possibly vascular). A neurosurgeon (who Im seeing to deal with the pain) looked at old MRI/CT scans a few weeks ago and commented I have an elongated styloid process on the left. […]

  • Incredible dizziness
    by Tammy1 on December 4, 2022

    Has anyone experienced severe dizziness with ES? Any suggestions for symptom relief? I have been taking Meclizine 25mgs with little relief and major drowsiness. Any other suggestions? 3 posts – 3 participants Read full topic

  • Eagle for me
    by analiadelcas on December 2, 2022

    I need help, i having the worst days now. My ear hurtas, my mouth and back head too. Can’t handle noise. I just can’t make it no more. Can’t manage pain What can I do ? 5 posts – 3 participants Read full topic

  • New here, VES diagnosis, and admittedly overwhelmed
    by smallgirlbigmoutains on December 1, 2022

    Hi Everyone! I am a newly diagnosed ES (VES specifically) patient trying to navigate this experience. It has been a journey to figure out why I am sick, and I am so insanely grateful to find this community now. I am a local Coloradan and am beginning to work with Dr. Hep who seems to have amazing reviews from this community, as well as my new neurologist. I would love to connect with anyone out […]

  • “New Kid on the Block”
    by Isaiah_40_31 on December 1, 2022

    Check out our Home Page, & you will see a new category just beneath the Welcome category. It’s called ‘WE’RE IN THIS TOGETHER (WiTT). Ben’s Friends has recently partnered with WiTT which is a relatively new organization whose aim is to help people get the support they need when they are in the midst of a difficult health situation where help would be appreciated. WiTT allows you to set […]

  • A little about my story
    by Millcf on November 30, 2022

    Hey everyone! Really glad that they have this website set up, as this is one of the weirdest diseases out there! I’m 32 years old with two little kids so this whole thing has been very difficult. My story starts 3 years ago when I was trying to go to bed one night and my body just had a burning jolting feeling down it. I felt like I was struggling to breathe, had real bad chest pain, some real […]

  • Shoulder pain and weakness after surgery
    by Millcf on November 28, 2022

    Hey everyone, I am new here. I will be sharing my story here soon but had a question in the meantime. I had surgery 7 weeks ago and have had no relief of my symptoms so far. One of the issues is that my shoulder is weak and I am having “winging” of my shoulder blade. I can’t lift my left arm above my head. I know it is probably because of my accessory nerve being stretched for some time. My […]

  • First Bite Syndrome OR Jaw Issues
    by MamaBear6 on November 27, 2022

    Hey!! Sorry it has been a bit since Ive posted… I have dealt with quite a bit!! Just to follow up… I had my Left Styloidectomy September 26 and my Right Styloidectomy November 14 and unfortunately I THINK I am now dealing with First Bite Syndrome but Im not 100% so Im coming here to see if anyone has any of you havr experience with this? Ever since my Surgery on the 14th, my teeth/molars on […]