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

  • ES and cervical spine imbalance?
    by Tjmhawk01 on July 1, 2022

    Prior to getting diagnosed, as many have, I was constantly in PT. I heard it all…subluxed facets, instability, tightness, etc. I faithfully did the exercises but when I tried to progress, things got ugly. This is a common occurrence here. Now, post op my PTs are telling me still that my cervical ligaments are tight and I’ve begun the strengthening exercises again (mostly just chin tucks). I […]

  • Any other surgeons in mn recommended?
    by Millymay on June 30, 2022

    So apparently Dr Omlie is no longer allowed to do anymore Eagle syndrome surgeries, so I now have to find another surgeon anyone any ideas, preferably Minnesota but I will travel to surrounding states??? 12 posts – 5 participants Read full topic

  • Recovery day 13
    by Rickstarbird on June 30, 2022

    Hey all, it’s day 13 of my recovery and I’m happy to report that I’m doing well! My wound is healing nicely, and the pain is minimal. Still some pain swallowing and pain in my jaw and tongue. Also still struggling with the shoulder pain but that is improving. I had my follow up with Dr. Aninno on Monday and he was able to validate a lot of my suspicions which was really great. Turns out […]

  • ES Surgery- Story and Setbacks
    by Emma123 on June 30, 2022

    Hi all, Long time lurker who finally signed up for account here! I’ve been dealing with ES for the last 3 years and wanted to share my story. I tried to keep it brief, but want to make sure I’m also informative in case anyone else has similar situations… So sorry it’s a bit long. In short I have been in pain almost every day for the last 3 years. I feel good in the mornings but by the end […]

  • Surgery Completed!
    by tokenegret on June 29, 2022

    Yay!! Done, and can already see better. Nice neat incision 9 posts – 8 participants Read full topic

  • I havent been diagnosed but have many symptoms and wanted to share my ct
    by Talth on June 29, 2022

    Could this be the cause? I have burning tongue, Pain in left tonsil, foreign body sensation, headaches, earaches, dizziness and on pushing my left tonsil I can feel something like a bone that makes a cracking sound in my ear. 6 posts – 4 participants Read full topic

  • Shout out to medical marijuana for post op pain and swelling
    by elijah on June 27, 2022

    Hi, I had my bilateral styloidectomy last Monday. The pain around my ears and jaw can be really intense and I don’t want to keep taking Tylenol to reduce the inflammation. I’m also not taking any oxycodone due to its side effects that haven’t been kind to me. It finally dawned on me that I read somewhere how medical marijuana can be just as effective for post surgery pain and inflammation […]

  • Post op incision care recommendation to others
    by Tjmhawk01 on June 27, 2022

    I’ve read a lot about incision care here and wanted to share my recent experience. Last week my PT highly recommended Cica-Care silicone sheets- I have no idea how they compare to others but she was adamant about this brand. They’re expensive – $25 for a 5×6” piece but if you wash them with soapy water and let air dry, you can reuse them. I understand this way, the strip will last about a […]

  • IJV compression and overheated brain
    by vdm on June 27, 2022

    I think I figured out one of the brainfog aspects with IJV. Overheated brain. I guess we, those with IJV compression and brain fog, literally feel like under constant heatstroke? It seems the heat exchange inside the skull largely depends on the blood and CSF circulation (too lazy to look for references but I’ve read it somewhere). That would possibly explain hot weather, sauna, hot shower […]

  • Styloid Process Size Dr. P Summary
    by Bc2 on June 26, 2022

    8 posts – 3 participants Read full topic