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

  • You might find a specialist for your rare disease in our Recommend a Doctor pages
    by BF_Writer on August 11, 2022

    Sascha Gallardo – November 1, 2021 Rare disease and chronic illness patients need to consult specialists or doctors who are very familiar with their condition. But especially in the case of rare patients, it’s not that easy to find someone who has many years of experience treating patients who have the same rare disease. Since Ben’s Friends is a network of patient communities, the majority […]

  • A&D waiting times in the US
    by vdm on August 11, 2022

    Just wondering, how long would you approximately need to wait to see an emergency doctor in the States since the moment you entered the hospital? 2 posts – 2 participants Read full topic

  • New member and would love some help and advice for jugular variant
    by Stac on August 10, 2022

    Hi everyone. I am new to this site and vascular eagles in general. I have gotten a lot of information over the months, especially from this website(thank you), and thought I better chime in and ask some questions as I try to navigate what is causing what… My symptoms started long ago in 2003 when I was 17 and unfortunately we haven’t gotten to the bottom of it yet. I became totally bedridden […]

  • Post surgery update, support, and motivation
    by Dakotank on August 10, 2022

    So, first off, I would like to say thank you to the wonderful people who frequent this forum! When I discovered this group around two months ago I was terrified. I had endured symptoms dating back to 2013 and they had reached a point where I had found myself seeking answers and care once again. Luckily for me a radiologist had made a point to highlight the styloid process being exceptionally […]

  • Preparing for Your Doctor’s Appointment
    by BF_Writer on August 10, 2022

    Sascha Gallardo – October 13, 2020 Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we are also dealing with the Covid-19 pandemic, the challenge has been doubled. Considering the difficulty of getting an appointment and the risks associated with going to a hospital and being exposed to the virus, it is important to be well prepared […]

  • 2nd Surgery less than 24 hours away
    by hyperichard on August 9, 2022

    Hi all, 2nd surgery is happening tomorrow at 2:30 Colorado time with Dr Hepworth. A bit anxious because if this surgery does not go well as of now, there isn’t much more to try other than a cervical spine fusion (very last resort of course). Could use some positive vibes my way if possible. And just like the first surgery I will keep you all updated and hopefully can provide very happy […]

  • 2 days away to appointment!
    by Ddmarie on August 9, 2022

    I can’t believe I’m finally 2 days away from my appointment with Dr Hackman! Nervous about everything; The flight the appointment the outcome. Praying that he will be able to help me. I want to thank you all on here. If it weren’t for all of you, some days I don’t know what I wouldve done! You all are really the best. 25 posts – 9 participants Read full topic

  • 3 years with possible ES. Tried prolo and upper cervical care but not relief , it is time for a surgery
    by Emilio on August 8, 2022

    Hello, I tried to stay away from this forum since I thought I would only consider surgery if I had tried everything. After trying prolo with Hauser and upper cervical care, I think it is now time to look back into ES. I now have bilateral neck tightness mainly on the SCM, scalenes and trap and some tightness where the styloid is located (sometimes a bit of pain) . It started on the right side […]

  • Made it to Denver again
    by TheDude on August 6, 2022

    Hi friends, We arrived in Denver safety but it was a super exhausting trip this time due to hot weather and aggravated symptoms. Next weeks I’ll undergo a cerebral angiography and intracranial venogram followed by a Styloidectomy with Dr. Hepworth and vascular surgeons few days later. I’m a bit excited and nervous about the surgeries. The luck has been challenged so many times already with […]

  • How to prepare for a surgery
    by BF_Writer on August 3, 2022

    Sascha Gallardo – May 11, 2021 After so many doctors appointments, you finally have a diagnosis. And as part of the treatment plan, you have to undergo a surgery. Although each type of surgery is certainly different from the other and would require some specific preparations, having a general idea of what needs to be done before the operation can help you better cope both with the surgery and […]