We tend to disagree on here with the figures; more then likely the numbers with ES are higher than that, it’s just undiagnosed! Because doctors are taught that it’s so rare, they don’t look for it…
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I checked all day and no email so thank you for posting it direct. I couldn’t agree with you more. I see a new primary care ENT this Wednesday and if you could pray for an out of state referral, I would appreciate it. I met his nurse practitioner this past Friday when I went for another ear debridement and he said an in or out of state referral was possible. I am a member of Eagle Syndrome Group on Facebook and a lady recently posted that I have an issue with my hyoid bone that I had missed. So one more piece of the puzzle was given to me to make my case on Wednesday for Dr. Hepworth in Colorado. To my knowledge he is the only one this side of the US who has training and experience with complicated Eagle’s and vascular Eagle’s. Thank you for posting and message me anytime! I will look for you too.
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@Isaiah_40_31 and @Jules would you be willing to look at my hyoid bone a little closer toward the very end of the video with close-up head tilt with the brain missing? 
It looks like the 3 pieces that make up the hyoid are twisted or slipped? There is a pointed piece on one side and a piece that looks slipped backwards on the other side. When I look at the hyoid in the second video with the head straight up and down, the extreme end of the hyoid is definitely higher on the right side than the left side and now I am curious if the hyoid bone is what is pressing into my throat on the right side causing a fleshy bump inside my mouth on the tonsilar fossa the size of a marble instead of the actual styloid.
Does anyone possibly know a proper medical term for a hyoid bone that is slipped or deformed/malformed due to ES? Can be viewed in the moving videos. The right side is higher than the left as well.
Do you have trouble maintaining your blood pressure?
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Your hyoid looks okay to me, but I’m not an expert…I don’t think you’d be able to feel the hyoid bone process inside your mouth…
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Hi @Susinc! Yes, I do. I feel like I am going to pass out when I stand up or stand up too quickly. I was hoping I don’t have POTS. I also will be just sitting or standing and my blood pressure falls and I feel like I’m going to pass out. I’m 42 and they started at 29. The doctors laugh and say they can’t find anything since my blood pressure appears normal at my office visits but usually with a high heart rate.
Thank you @Jules! I may be interpreting the greater horn as a slipped piece of the hyoid when in facts it’s anatomically correct. I appreciate your reply! 
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Hi @Heather - I agree w/ @Jules. Your hyoid looks perfect to me. I’m not sure what the person on FB saw but in the video where the full hyoid can be seen it looks great. I say this with the caveat that I’m not a doctor which you know.
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@Heather I am curious what you were told on Facebook about your hyoid bone.
I refer to the crooked hyoid as “canted” when one side sits higher than the other. Can’t recall if I came across that term in a paper or if I just came up with it myself. Very little is known or acknowledged in medicine about the role of the position and posture of the hyoid bone and most doctors would look at you like your crazy if you raised concerns about it, but I fully believe these variations can cause hyoid bone syndrome.
It is really hard to tell on your CT Scan but I believe you may have carotid artery entrapment by the right greater cornu of the hyoid bone. Would it be possible to review your CT scan myself?
- Connor
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Hi @CJsBattle! I have read about your case since October and many of your posts have helped me get through some weary and awful days and nights. I just wanted to say thank you!
I appreciate your input on the hyoid and absolutely would love it if you would be willing to review my CT scan. I am away from my laptop at the moment but what would email be the best way to send it?
I see my new ENT with Dignity Health tomorrow morning at 8:30 am so will mention what tone mentioned so far! What a blessing you are. Thank you Connor.
Heather
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“There is site where you can share your imaging anonymously (personal information is stripped off from the images before uploading). If you are ok with sharing it, There is a site and it is called (https://www.dicomlibrary.com/ ) and there is video on how to upload and share your images on it. I find it convenient way in sharing MRIs/CTs anonymously but you need a faster upload speeds on your internet connection or it will take a bit of time if you are uploading huge MRI/CT sequences.”
Quote from member @KoolDude on how to upload. Hope that is helpful.
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Thanks so much! Doing this right now with the help of my husband.
Heather
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Please be aware that the dicomlibrary still displays your full requisition sheet, including your full name, date of birth, list of allergies, height, weight, your MRN/accession numbers etc.
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Do you recall how she can strip it off ?
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I’ll try to delete and repost. DL provided two links. One and another that said “anonymous link.” To me it was clear the second link was probably the more proper of the two but my hubby insisted the first link was just fine after lecturing me on how important it is to remove PHI. 
Thank you for the heads up and I’ll try to repost the other link.
Heather
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@vdm @Leah @CJsBattle @Isaiah_40_31 @Jules any better? This link was labeled Anonymized DICOM Study. DicomLibrary software only included two links. The one I originally posted with PHI and this one. Thank you for the heads up again @vdm. Much, much appreciated.
Heather
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I wanted to share that my ENT with Dignity Health gave me a referral to see Dr. Hepworth in Colorado. I live in Northern California and there were no surgeons we could find who were confident in vascular Eagle’s cases. I am beyond grateful to my ENT Dr. Scott McCusker for his referral. I didn’t even have to beg but I did break down crying when he said, “No problem, I’ll absolutely give you a referral out of state.” God is good.
Heather
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What great news @Heather! Yes! God is good!!
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that’s great news! I hope that the wait is not too long 
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