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Eagle Syndrome - Online Support Group

Persistent Eagle Syndrome Pain, Please Advise Me?

Hello everyone,

I have posted here before. I have had pain that I believe is related to eagle syndrome for seven or eight years. Several years ago I got a diagnosis of eagle syndrome and I had an external procedure to shorten the styloid process on both sides. I didn't know too much about the condition at that time and the ENT who did the procedure had never done it before.

The surgery didn't help the symptoms, which are largely vascular. I am very skeptical that enough of the bone and calcified stylohyoid ligament were removed. Prior to surgery, my styloids were 4.7cm and 3.7cm.

Since then I have had the same pain, even some worsening vascular symptoms and I can't get anyone to help me. Recently I had some CT scans taken. I was wondering if you could tell me whether you think they look normal? The styloids are both still at least 2.5cm on each side and there is extensive calcification at the attachment of the stylohyoid ligament to the hyoid bone at the lesser cornu.

I'm sure you guys know how to read these scans but I marked the styloids and calcified ligaments with black arrows.

There is something I don't quite understand though, which is what I marked with a blue arrow. It appears to me to look like another bone of some sort under the stylohyoid ligament. I'm not sure what that is. It should be noted that I was also advised of the need to resect the greater horn of the hyoid bone so that accounts for why it is missing on these scans. On a previous scan, it appeared as though the tip of the greater horn was compressing the carotid artery. But did they leave a piece of that bone in there? I have no idea.

The doctors I saw didn't seem to think there was anything "significantly" wrong with these scans but I haven't gone over them in great depth.

It feels like a sharp stabbing pain at the base of my tongue. If I turn my neck in almost any direction I get light headed and weak. I get heart palpitations and feel throbbing behind my jaw and pain throughout the body of the carotids in my head and face. I strongly believe that the calcified bone that attaches to the hyoid is a major cause of this pain.

What do you guys think of these scans? I know we all probably have confirmation bias given that we all have these symptoms but I am looking for as unbiased an opinion as possible. Does it look like they didn't remove enough of the bone and ligament?

Any advise you could give me would really be appreciated.

337-RightSide.jpg (202 KB) 338-LeftSide.jpg (184 KB)

jrodefeld,

I will leave any comments on your question to others on this site who probably have more in depth knowledge than me, but I would like to point out another potential issue you may have. If you look at the back of your neck, there appears to be quite a bit of calcification and one of your vertebrae has what appears to be an Arcuate Foramen or Posterior Ponticle (I have this condition, but am having a hard time convincing the doctors). It is hard for me to tell, but it is most likely the Atlas (C1). Both the Vertebral artery and the first cervical nerve run along the groove. The calcification is most likely pushing against one or both, causing very similar symptoms to ES.

Take a look at the attached files.

Good luck,

Red Pill

340-ArcuateForamenDescription.JPG (1.16 MB) 341-ArcuateForamenPicture.JPG (1010 KB)

One more for good measure.

Red Pill

339-KimmerlyAnomalylinkedtoheadacheshearingloss.pdf (67.7 KB)

Tic Douloreux. Trigeminal neuralgia. I have had this before and after my styloidectomy. I had carotid involvement. National Institute of Neurological Disorders and Stroke.

Thanks for the replies. But I am more interested in knowing whether you think that the styloids and stylohyoid ligaments could still be causing symptoms based on their current length?

Jrodefeld, yes, I absolutely believe the styloids could still be causing pain at their current length. I'm having the same issue.

Does anyone know what the blue arrow is pointing at? It looks like a free floating bone of some sort, I'm not sure what it is though. Like I said before, a previous surgeon thought there was reason to resect the tip of the greater horn of the hyoid as there was some suspicion of impingement on the carotids. Could they have left a bone fragment there?

I'm just speculating of course. But, like others, I have had a few CT scans and an MRI over the last couple of years and they always claim the scans are "unremarkable". Just from the severity of the symptoms, I know for certain that either the styloids themselves, the calcified ligament or whatever that blue arrow is pointing at, is causing significant impingement on my vascular structures in my neck.

The tests may not be able to prove this conclusively, but my medical history and current symptoms should be more than enough to warrant prompt treatment. I don't know what the long term implications of impingement of the carotids is, but I don't want to find out. I'm not sure how to get the doctors to do something about this though?

Anyway, any more feedback would be appreciated. Thanks.

Hello, I hope you get relief soon. Yes, the styloid is way too long. It looks like it is pressing on the carotid. I wouldn't worry about what your blue arrow is pointing at or the upper arrows. Your issue is the bottom black arrows. I had surgery last fall and my ct's looked similar. I feel totally better and very blessed. My surgeons removed both all the way back to the skull. They measured 4.0 cm each. I now have 0 symptoms. No more throat pain or feeling dizzy and light headed. Get a good surgeon and get it done and get your life back. I can't describe how much better I feel now. Good Luck to you.

Thanks for the reply. So do you think that both the styloids themselves (top black arrows) and the calcified ligament (bottom black arrows) should be removed?

If I have surgery again I want to make sure they remove everything that could be causing symptoms. You say your scans looked similar to mine. Did you have carotid symptoms as well?

When I had surgery before, obviously they left a lot of the bone there. And from what I have read, a lot of the symptoms have to do not just with the length but the angle of the bone. I might have even had worse symptoms since surgery because the bone that was left (or the stylohyoid ligament), was angled more towards the carotid and nerves.

It seems like it is much better to remove the ENTIRE styloid process and calcified ligament the first time and don't leave any behind.

Which surgeon did your surgery? I live in California, but even if you live elsewhere maybe I could contact the doctor?

Thanks for the help. It is encouraging that you had similar symptoms to me and found relief.

jonsty said:

Hello, I hope you get relief soon. Yes, the styloid is way too long. It looks like it is pressing on the carotid. I wouldn't worry about what your blue arrow is pointing at or the upper arrows. Your issue is the bottom black arrows. I had surgery last fall and my ct's looked similar. I feel totally better and very blessed. My surgeons removed both all the way back to the skull. They measured 4.0 cm each. I now have 0 symptoms. No more throat pain or feeling dizzy and light headed. Get a good surgeon and get it done and get your life back. I can't describe how much better I feel now. Good Luck to you.

Yes I had carotid symptoms. It was terrible. I went to U of Md. Medical Center. Dr. Taylor and Guardiani. There is a database of doctors on this site somewhere. I would just remove the styloid process and leave everything else alone. Usually it is the styloid process that causes the symptoms.

It shouldn't matter about the length should it to cause symptoms should it? Because when it's calcified that's the main cause of symptoms, which is what you have.

Do you all think that it is likely that the styloids and/or calcified stylohyoid ligaments are compressing the carotids? That is what jonsty said and I know that I have carotid compression due to the symptoms but would that be clearly indicated based on the scans?

I feel constant throbbing, swelling and transient weakness, heart palpitations and cardiovascular symptoms based on turning my neck very slightly in any direction. I mean, these are some pretty significant and concerning symptoms!

I just need to convince the doctors that they need to fix the problem.

Thanks for the help.

hi jonsty did you have calcified stylohyoid ligaments or just
enlongated styloids ? what happens if there is
calcified stylohyoid ligaments down to the hyoid bone how would the doctors fix this?

Hello, I hope you get relief soon. Yes, the styloid is way too long. It looks like it is pressing on the carotid. I wouldn't worry about what your blue arrow is pointing at or the upper arrows. Your issue is the bottom black arrows. I had surgery last fall and my ct's looked similar. I feel totally better and very blessed. My surgeons removed both all the way back to the skull. They measured 4.0 cm each. I now have 0 symptoms. No more throat pain or feeling dizzy and light headed. Get a good surgeon and get it done and get your life back. I can't describe how much better I feel now. Good Luck to you.

The surgeons said that the ligament looked ok. They said it is the styloid process that causes symptoms. Even if you had calcified ligaments, they most likely would not cause any symptoms. The symptoms are caused by the styloid process. Now, this is what both my surgeons said. I haven't heard anyone that had symptoms due to the ligament. Although, who knows really? This is a wierd condition.

jonsty,

While it could very well be true what the surgeons said (not that any doctor has EVER been wrong about these things), I can't help thinking that the "symptoms" are caused by COMPRESSION/ENTRAPMENT of the neuro-vascular structures. Does it really matter what is compressing/entrapping those structures?

It seems to me that a calcified stylohyoid ligament (which passes through the fork of the interior and exterior carotid branches) could certainly compress blood vessels and any nerves that happen to be in the way, depending on how you turn your head. Perhaps not the same locations that the styloid process would or even 100% of the time , but it should not be written off as impossible.

That kind of myopic and reductive linear thinking drives me crazy for just everyday life, but when "medical professionals" use it for a diagnosis, it really makes me see red.

That's my 2 cents worth anyway.

Red Pill

I agree with you red pill. Any calcified structure can cause symptoms if it gets big enough and starts to hit nerves and arteries. Although I do agree that most symptoms with this disease are caused by the styloid process. The reason is that it is in an area that hits other structures easier than the ligament would. My ct showed very long styloid processes but little to no calcification on the ligaments. They said that was common. They have never had a patient that needed the ligament to be removed. I don't think they said anything wrong really. In their practice, they have only seen styloid processes that were too long.

Jonsty - can you share a little more about the type of throat pain you had? Was it in the front of your throat?



jonsty said:

Hello, I hope you get relief soon. Yes, the styloid is way too long. It looks like it is pressing on the carotid. I wouldn’t worry about what your blue arrow is pointing at or the upper arrows. Your issue is the bottom black arrows. I had surgery last fall and my ct’s looked similar. I feel totally better and very blessed. My surgeons removed both all the way back to the skull. They measured 4.0 cm each. I now have 0 symptoms. No more throat pain or feeling dizzy and light headed. Get a good surgeon and get it done and get your life back. I can’t describe how much better I feel now. Good Luck to you.

Hi jonsty, not sure if you’re still on this site but would be really grateful if you could let me know who your surgeon was. Thank you and hope to hear from you!

If you’re looking at coming to the US for surgery, you should consider Dr. Samji in California. He is one of the most experienced ES surgeons in the US if not in the world. His contact info is via his medical assistant Kim Elliott - kimberly @ caminoent. com. Ofc phone # is 408 - 227 - 6300.

I hope you find the help you need ASAP!!

Hey Jonsty, just a response to whether the calcified ligaments cause symptoms…YES they do! I have not yet seen the surgeon whom I hoping will do my surgery so I can’t report on that stuff quite yet, but my most recent CT scan w/contrast report says my SPs are normal length. I can only surmise that it must be the ligaments that are showing then because I have seen the scans and they are long…or something is! AND…I believe the calcified ligaments are what sometimes gets stuck on my hyoid bone and causes me some pretty intense momentary panic trying to maneuver my head and neck to unstick whatever it is!
I’ve got to check out this slicing thing on this site so I can try and get a better look…lord knows I’ve got plenty of scans to choose from!!!