I have a lot of the Eagles symptoms, especially bizarre ones like vocal vibration conducted towards my Right eardrum (sometimes left), vocal vibration going through my right cheek, difficulty swallowing saliva (food is easier), pain & foreign body sensation in the styloid areas on both sides, TMJ-type aching in jaw but CHEWING feels good not painful at all. UCLA said I do not have Eagles, "styloids not significantly elongated" no measurements given. I am suspicious they missed the calcifications you can see especially on the Right ligament.
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Yes, there are patches of elongation, and it looks like the styloid process on the right looks a bit on the wide side too- it's not always the length but the width and angle have an impact too. And it would be good to have a measurement too. But we are only fellow patients here ourselves, not doctors. Are there any other doctors you could try?
Hi Adam, I also experience bizarre symptoms, some of them similar to yours, like that vocal vibration originated in the neck or the back of my head and which is conducted towards to the ear, eyes and around my head sometimes. Can I ask you, does it get triggered or does it get worse when you speak? Does it make you feel dizzy? I easily lose concentration when I experience this sensation. Any words of advice are welcome. Thank you
hi Santiago thanks for replying. You are the first person I have seen with the same vocal vibration issue. I assume you have been diagnosed with ES (I have not yet been diagnosed). Luckily I do not get dizzy, just totally annoyed by the feeling in my ear like having a bug in your ear. It feels very unpredictable. Sometimes it happens during "M" words or new words. Sometimes it is due to the position of my jaw condyle near my ear, other times it is conducted from behind the ear like you are describing. The vibration through the jaw/cheek happens more often but easier to tolerate. The same jaw/cheek areas are constantly tingling and tight feeling.
If you are feeling Dizzy that sounds like your styloids might be pressing on arteries. How is your ES being treated?
I am curious if anything was mentioned about the "rice grain" type pieces along your stylohyoid muscle.
Do your docs think these are calcifications?
Are you familiar with myositis ossificans? (Spotty, rice grain type ossifications along a muscle, which can be post traumatic and otherwise nonhereditary. Can be very painful)
hi Snapple -- my docs don't catch anything. They agree the CT shows some type of calcification but they won't dig any deeper so I'm not sure what to do next. I am 99% sure it is the styloyhoid ligament with calcified sections. You can see my hyoid bone is pulled up/over on the right side and I think that is causing some of my swallowing problems. I wonder if "partial eagles" shortens the ligament when pieces become calcified.
Never heard of myositis ossificans but I looked it up and that seems more related to sports injuries to elbows, knees, ankles and no examples of it happening in the jaw area.
Adam83- Hrm, that is unusual. The calcifications do go on what looks like a very clear path up to the hyoid. Did you happen to get a look at the report itself from your ct? Some docs are reluctant to discuss incidentals with patients if they think it’s just a random finding because they don’t want to upset them or give them radical ideas.
I don’t know if there is a partial eagles, but I do know my doc thinks my calcification are caused by trauma in the area, much like the sports injuries in joints etc.
Apparently ossification is just one of the fascinating ways the body has an inflammatory response.
But who knows what these things are! I hope you can bring these to some other docs and see what they think.
Oh, also some of my dancer friends get these rice grain things in their feet from muscle stretching and injury. I know it really messes up how their feet are able to stretch and flex their feet. It may make sense if these are calcification that they would pull on your hyoid. (They also tend to have bones spurs etc that go with them too tho)
There are degrees of calcification of the stylohyoid ligament- it's often partially calcified, and in that case if it's giving symptoms then that sounds like ES! Especially if that's disrupting the hyoid bone's position. I found some research (it's in the ES Information section, but here's the relevant bit)
'A new diagnostic classification of Stylohyoid Complex Syndrome (SHCS) was suggested by Candice C. Colby, MD; John M. Del Gaudio,MD in their paper ‘Stylohyoid Complex Syndrome- A New Diagnostic Classification’ ( JAMA Network), and they suggested that an elongated styloid process, ossified stylohyoid ligament or elongated hyoid bone could result in tension and reduced distensibility of the SHC, resulting in irritation of the surrounding cervical structures with movement of the complex.'
i.e. you get pain and problems swallowing with any one of those problems as it disrupts the whole complex; that sounds like it's happening with you. Printing out relevant research is a good idea to take with you to appts. with docs, as they don't seem very knowledgeable about ES and probably heard a vague mention of it in medical school a zillion years ago with a very brief description of it, and haven't seen any research on it since!
Are you able with insurance etc. to try any other doctors- are there any on the doctors list more familiar with ES?
adam83 said:
hi Snapple -- my docs don't catch anything. They agree the CT shows some type of calcification but they won't dig any deeper so I'm not sure what to do next. I am 99% sure it is the styloyhoid ligament with calcified sections. You can see my hyoid bone is pulled up/over on the right side and I think that is causing some of my swallowing problems. I wonder if "partial eagles" shortens the ligament when pieces become calcified.
Never heard of myositis ossificans but I looked it up and that seems more related to sports injuries to elbows, knees, ankles and no examples of it happening in the jaw area.
Where is your Styloid of the left side of the picture? It seems too look like it was broken and pieces are just stuck there and now infusing with everything. I’ve never seen that before. If you look at my ct scan it’s just two long horns lol I’ll add a picture of it.
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@Kelx -- I'm noticing what you're talking about now. That is pretty weird...
@Snapple -- The only notes on the CT from the radiologist was "styloid processes not significantly elongated". No measurements. Not sure if they are elongated slightly but not enough? No notes mentioned the calcified 'fragments'.
@Jules -- thanks for sharing that info. I am stuck in HMO system with the UCLA network for now. I emailed my scans to an ENT in San Jose who said he would look at them eventually.
Did you have any sort of neck trauma? Looks like you did as they seem too be all in pieces, but I’m not doctor lol maybe they just broke in pieces themselves lol buy regardless I dont think that’s normal so you need too find someone to take those pieces out
Styloids can be broken even by laughing, yawning... not just trauma- think about that next time you have a good laugh! I think I read some research that they can form in one long bone, or in lumps and nobbly bits.
@Kelx I have had all kinds of small 'traumas' to my neck all over it. I really can't pinpoint 1 specific one. It could be any like Jules is saying. I can't find anyone to even acknowledge that those calcified pieces are abnormal, let alone strategize how to fix it. All my docs think my issues are all psychological.
Omg seriously! I’m no doctor but I believe that’s abnormal! Don’t stop finding someone! I went through 6 specialists in a year, 3 were ENT!!! And they were all clueless. I was at my wits end! Finally found a specialist who sees this condition all the time and knows my styloids are a problem… Gotta wait 4 more months for surgury cause he’s busy… Ah 4 more months of pain…
There can be another option too. I was just reading about this yesterday when I was looking through some of the past discussions. We've had some people in the past whose styloids looked like pieces in their scans, but they were actually intact. If I remember correctly, sometimes some sections of the styloid are more calcified than others and only those harder parts show up on the scans.
@heidemt It makes total sense to me. I just can't find a doc to look at the 3d scans or help me out. Any good Docs in the LA area who are eagles experts??
Do what I did, go on the internet and look up all the radiologists in your area. One will reply back and have them look at your scan.
Adam, there is one doctor at Cedars Sinai that's supposed to have some Eagles experience - Dr Bruce Gewertz. Also Dr. Henry Chen has done a couple Eagles surgeries. He's not that experienced in Eagles, but he's willing to help in some cases. The most experienced Eagles doctor in California is Dr. Samji in San Jose. It might be worth it to send your scan to him. Check out the doctor's list in the tabs on the top of the page for their numbers.
Adam, there is also a doctor at UCLA who says he is an Eagles expert - Dr. Gerald Berke. I understand he has done some Eagles surgeries, but I don't know that he's done any for any forum members.