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Eagle Syndrome - Online Support Group

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Im happy that I found this page but also makes me so sad that so many are going through similar pains. My pain started over 2 years ago right by my carotid artery on the left front side of my neck. It was a sharp pulling pain that eventually spread to under my jaw. I have seen so many doctors ( 5 Ents, rheumatologist, infection disease specialist, dentists, oral surgeon, neurologist) and have done so many scans and blood work and nothing. Including needle biopsy recently. Throughout the months the pain has subsided and it’s more like a pressure on the left side of my neck including weird Sensations in my face and temporal headaches, I’ve never had headaches in my life so this is new. Also my lymph nodes on that side are enlarged especially under my jaw. Its not the pain that is the worst ,it’s this feeling of being unwell. I’ve noticed any physical activity makes it worse, also lifting my head up makes it inflamed. My scm muscle is so tight, the vain on that side is more visible, I have a weird bump behind my ear. I have pressure in my ears, weird mucus I spit out daily, and these empty burps when I get up in the morning. I don’t have any pain when I swallow but it does feel like pressure, and inflammation deep inside my throat. I ran into this page last year and thought I could possibly have ES. I went to see dr. Miloro in Chicago , he examined me and he looked at my styloid processes and said one is slightly longer but this does definitely not look like eagles. I just recently read an article about hyoid bone syndrome. None of the doctors around here seem to know what it is but one has agreed to inject a shot in 2 weeks to see if that helps. I’m just looking to see if anyone has had hyoid bone syndrome and knows of a dr that I could see. Just like so many on here I am absolutely miserable. Here is a pic of my styloid on the painful side, the other I took at a dentist office. It shows something weird but the doctors won’t acknowledge.

Also I have a small bump on the same side by edge hyoid bone that is painful which made me think of hyoid bone syndrome.

styloid on other side.

Hi Kaska,

What you’re seeing looks to me like stylohyoid ligament calcification not your actual styloid process. The styloid process is attached to the inferior part of the temporal bone of your skull & extends to the lesser horn of your hyoid bone. What you’ve posted here looks like it’s not attached to anything.

A CT scan or X-ray only shows calcified tissues thus when there is calcification of the s-h ligament, it will appear as a random line (as in your scans), sometimes attached at the hyoid bone or styloid process or sometimes free floating like yours meaning only a section of the ligament is calcified (as the soft part of the ligament won’t show up w/o contrast).

Eagle Syndrome is defined as elongation of the styloid process(es) OR calcification of the stylohyoid ligament(s) OR a combination of both. I’m not a doctor but I would guess your symptoms are a result of having a partially calcified s-h ligament. The lump on your hyoid bone could also be calcified ligament & not actually a problem w/ your hyoid bone itself. I think you have been misdiagnosed (again, not a doctor). Even though there doesn’t appear to be a large area of calcification, the area where your calcification is, is very vascular & contains some of the cranial nerves. Depending on the position of the calcified segment, you could have nerve or vascular impingement or irritation.

That is not to say you don’t have hyoid bone syndrome, however, any good ES surgeon would also be aware of & could diagnose & do surgery to help with hyoid bone syndrome. You want to search for a skull-based surgeon. There are ENTs who have a skull-based surgery subspecialty. On this forum, the most experienced ES surgeons in the US are Dr. Cognetti in Philadelphia, PA, Dr. Milligan in Phoenix, AZ, & Dr. Samji in San Jose, CA. All of these doctors will do phone consults, but they would need a copy of your CT scan along w/ a radiologists written report ahead of time. I suggest that you contact the radiology lab that did your scan & ask them to note whether or not your stylohyoid ligaments are calcified, or ask your PCP for a new CT scan that specifically looks at the area from styloid process to hyoid bone. If you get it w/ contrast then the soft tissues will be visible as well. However, some of the better ES surgeons prefer a CT w/o contrast.

Getting the injection in two weeks should also be telling. That is actually one of the diagnostic tools used for Eagle Syndrome. If the injection (usually cortisone or lidocaine) stops your pain even momentarily, then there’s a reasonable chance you have ES.

Here’s the link to the US ES Doctor’s list:
EaglesSyndromeUSDoctors August 2017.docx (38.4 KB)

I hope this info helps you!

Thank you so much for your reply! I will definitely try and maybe get a better scan, not sure where to go to get a better one. Dr Miloro took that one, I’m surprised he didn’t mention the calcification possibility, he’s supposed to be familiar with Eagles . Thank you ! I hope the shot helps.

I hope the shot helps, too. There are a number of members here who had shots first before looking into surgery. Some found the pain left for several months where others it was minutes or hours or days. I hope you get long-term relief.

:blush:

Hello! Welcome! I see you’re in Alabama - how far away are from Birmingham? I wanted to see a guy at UAB named Dr. Withrow but he was not in my insurance network. I gravitate toward teaching institutions for big things like this but that’s just my preference. Anyway his nurse said he does ES surgeries. They were very good about calling me on the phone.

I’m only about 3 and a half hours away. I’m definitely going to look him up! Thank you so much!!

That’s not bad! I would call first, maybe he isn’t available on many plans because my network of providers is pretty wide. Keep us posted!

Hey guys, can I get some opinions on this please. I was able to get my CT scan into my computer. I’m not sure if this is normal length , but on the last picture could that be some calcification of the ligament? Between the styloid and hyoid. I don’t see that on the right.My pain is on the left.

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Hi Kaska!
Your styloids look very thick & a little elongated. The thickness can certainly be a cause of symptoms as well. The radiologist who read the scan should be able to measure them if you ask.

The area you’re questioning is most likely calcification of your ligament. It might be enough to be causing a problem. Mine looked very similar on both sides & thus were removed along w/ my styloids during my ES surgeries.

Thank you for replying! I’m so desperate for an answer. May I ask what dr did you see and how are you now?

Kaska,

Your journey sounds so familiar. I’m so glad I found this site as well. The members are so knowledgeable and helpful. I’m still trying to get a diagnosis also. Welcome, and I wish you the best on your journey.

Thank you! I was just reading your post. I’m glad your getting closer and hope you get relief soon! So thankful for this page. I feel less crazy and not alone.

Hi Kaska,

I saw Dr. Samji. I found him on this forum, & though he wasn’t the ENT who diagnosed me, his surgical plan & ES experience were both superior those of the diagnosing ENT. I am very blessed to live about 15 min from his office & about 7 min. from the surgery center he uses so didn’t have to do a major trip to see him.

My surgeries were in 11/14 & 08/15. I’m doing very well. The worst residual problem I have is First Bite Syndrome which I’ve gotten used to, & it’s symptoms have declined significantly since it first started right after surgery #1. It’s a small price to pay for getting my normal life back after ES attempted to rob it from me. The scars in my neck are virtually invisible at this point.

Thank you for sharing. I am so happy you got relief, it gives me hope. Honestly it’s so nice that your on here helping the rest of us looking for an answer. Thank you thank you!!

You’re most welcome, Kaska! Because of my faith in God, I believe everything that happens to us has a purpose. In this case, God has given me the opportunity to give back to the people on this forum the help I received during my time of crisis. It is my pleasure to be here informing & encouraging. I know Jules is here for the same reasons.

I’m so glad you’re finding support from what you’re reading. This is a very hard time for you, but persevering & finding the right surgeon for you will pay off in the end.
I’m always here to be a sounding board or whatever you need.

:blush:

So I had my shot today. About an hour ago. I just wanted to know for anyone who has had it when does it start taking effect? Right now I’m just really sore in that area from all the poking around the dr did, can’t tell if it helped.

Kaska, I am sorry for your ongoing pain. I can only say that I know exactly how you feel.

Isaiah, you said earlier to Kaska that “Getting the injection in two weeks should also be telling. That is actually one of the diagnostic tools used for Eagle Syndrome. If the injection (usually cortisone or lidocaine) stops your pain even momentarily, then there’s a reasonable chance you have ES.”

Where is the injection done? Is it placed in the tonsillar fossa?

Thank you for replying headcase! I actually just had the shot today. The doctor doesn’t think I have elongated styloid processes but there might be some calcification of the ligament near the hyoid bone. So he injected me right by the hyoid bone. So far I’m just really sore where he was poking around and can’t tell if it helped. Not sure if it takes effect immediately or maybe I have to wait a little bit. Also I’ve been having horrible shoulder pain on both sides, not sure if that’s a separate problem or part of this. I’m such a mess! As so many of us are :tired_face: