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Eagle Syndrome - Online Support Group

Welcome #2

Hi Newuserhere!

I wanted to send you an intro w/ a little more information about ES than you may have gotten from our Mod Support team so here you go!

To get started on this forum, click on the gray “How To Use This Site” link above & review the information there. You can search any topic using the gray magnifying glass icon in the upper right. Our Newbies Guide has lots of information about ES as
well as links to published research papers. We also have a list of doctors familiar w/ ES (see link at bottom of this email).

Eagle Syndrome is defined as 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combination of 1 & 2. The type of doctor that usually treats ES is a skull-based ENT surgeon, neurosurgeon or maxillofacial surgeon. These doctors are often cancer specialists. Understanding the type & thoroughness of a doctor’s surgical approach is important. We recommend the external (vs. intraoral) approach as the styloid can be removed back to the skull base & the stylohyoid ligaments, if calcified, can be removed from styloid tips to hyoid bone which provides the best long-term recovery from ES symptoms. Nerves & vascular tissues can also be better monitored via the external approach. A CT scan is the best way to diagnose ES. Your CT needs to show the area between your hyoid bone & skull base focusing on the styloid processes & stylohyoid ligaments. If you have calcification on your stylohyoid ligaments, that will also show up but the ligaments themselves will be invisible - only the calcified sections can be seen.

The symptoms of ES are caused by irritation of up to 6 cranial nerves that “live” in your neck in the same area as the styloid processes & stylohyoid ligaments. Elongation of the styloid(s) &/or calcification of the stylohyoid ligaments can cause irritation to these nerves. Alone each nerve when “upset” can create painful & sometimes scary symptoms. When more than one is irritated the symptoms caused can be downright debilitating. Additionally, vascular compression of the internal carotid artery &/or jugular vein can occur which creates other miserable & concerning symptoms such as migraines, visual changes, heart & blood pressure issues & intracranial hypertension (high blood pressure inside the skull). Obviously, the solution for recovery is to remove the offending bones/ligaments so the nerves &/or vascular tissues can recover. There is a series of YouTube videos called Two Minute Neuroscience . Each cranial nerve is featured in a two-minute video w/ explanation as to location, function & dysfunction of the nerve. It would be good for you to watch them. These are the nerves affected by ES: vagus, facial, glossopharyngeal, hypoglossal, trigeminal & accessory. Hopefully the information you receive will help you understand the source of some/most of your symptoms.

Please join any conversation on the forum or start your own. We like our new members to share their ES stories (even if not diagnosed) so we know best how to support you. Though we aren’t doctors, there is a wealth of experiential ES knowledge here. Please feel free to email me back if you have any specific questions.

We hope you find this a friendly, caring place.

Wishing you the best,
Isaiah_40_31

1 Like

Hi,
New member here.
My symptoms are,
Right lower jaw pain under ear since may.
Mild Swelling in the lower jaw since may.
Ear fullness and clogged since may
Neck pain.side of the neck mild swelling and a small lump since July.
Top side of the head above ear is very sore to touch since July.
Ringing and buzzing sound in the ear since July.some soft sound while lying down.
Feeling of something stuck in throat since August.
Side of the neck is so tight and stiff since august.
The pain in the lower jaw under ear doesn’t change since may. Still the same symptoms. It’s like sore and burning pain Continuously. No change in this symptom irrespective of taking NSAIDs or muscle relaxers. Been to different doctors.
Been to ENT to check ear infection. No infection.

Went to dentist. He told me to extract the upper wisdom tooth and did it in July. He said either upper wisdom tooth or a suspected crack /fracture in my lower first molar is causing these symptoms. I went to Endodontist and checked the crack. No tooth fracture and did a root canal. Still the same symptoms after wisdom tooth removal and root canal on lower molar. So the dentist telling me to check it with tmj specialist to check the jaw issue and tmj. He also want me to check about eagle syndrome. He said, he is not sure about it with my pan xray. He wants me to check with tmd specialist. Whether tmjd specialist can diagnose eagle syndrome? Please help me with inputs.

My symptoms started since may after I chew some meal more than usual. Immediately I felt soreness in the molars after the meal. Next day I heard a big pop in the jaw and this pain, Swelling started. I would like to know if this looks like eagle syndrome or TMJD. Any thoughts from anyone here?

I couldn’t upload the pan xray in the post. How to do that?

···

On Tue, Sep 15, 2020, 3:59 PM Isaiah_40_31 via Eagle Syndrome - Online Support Group <ben_eagle@discoursemail.com> wrote:

Isaiah_40_31
September 15

Hi Newuserhere!

I wanted to send you an intro w/ a little more information about ES than you may have gotten from our Mod Support team so here you go!

To get started on this forum, click on the gray “How To Use This Site” link above & review the information there. You can search any topic using the gray magnifying glass icon in the upper right. Our Newbies Guide has lots of information about ES as
well as links to published research papers. We also have a list of doctors familiar w/ ES (see link at bottom of this email).

Eagle Syndrome is defined as 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combination of 1 & 2. The type of doctor that usually treats ES is a skull-based ENT surgeon, neurosurgeon or maxillofacial surgeon. These doctors are often cancer specialists. Understanding the type & thoroughness of a doctor’s surgical approach is important. We recommend the external (vs. intraoral) approach as the styloid can be removed back to the skull base & the stylohyoid ligaments, if calcified, can be removed from styloid tips to hyoid bone which provides the best long-term recovery from ES symptoms. Nerves & vascular tissues can also be better monitored via the external approach. A CT scan is the best way to diagnose ES. Your CT needs to show the area between your hyoid bone & skull base focusing on the styloid processes & stylohyoid ligaments. If you have calcification on your stylohyoid ligaments, that will also show up but the ligaments themselves will be invisible - only the calcified sections can be seen.

The symptoms of ES are caused by irritation of up to 6 cranial nerves that “live” in your neck in the same area as the styloid processes & stylohyoid ligaments. Elongation of the styloid(s) &/or calcification of the stylohyoid ligaments can cause irritation to these nerves. Alone each nerve when “upset” can create painful & sometimes scary symptoms. When more than one is irritated the symptoms caused can be downright debilitating. Additionally, vascular compression of the internal carotid artery &/or jugular vein can occur which creates other miserable & concerning symptoms such as migraines, visual changes, heart & blood pressure issues & intracranial hypertension (high blood pressure inside the skull). Obviously, the solution for recovery is to remove the offending bones/ligaments so the nerves &/or vascular tissues can recover. There is a series of YouTube videos called Two Minute Neuroscience . Each cranial nerve is featured in a two-minute video w/ explanation as to location, function & dysfunction of the nerve. It would be good for you to watch them. These are the nerves affected by ES: vagus, facial, glossopharyngeal, hypoglossal, trigeminal & accessory. Hopefully the information you receive will help you understand the source of some/most of your symptoms.

Please join any conversation on the forum or start your own. We like our new members to share their ES stories (even if not diagnosed) so we know best how to support you. Though we aren’t doctors, there is a wealth of experiential ES knowledge here. Please feel free to email me back if you have any specific questions.

We hope you find this a friendly, caring place.

Wishing you the best,
Isaiah_40_31

US Doctors Familiar With ES, 2019 Doctor Information

US Doctors Familiar With Eagle Syndrome 2019: THIS IS A LIST OF DOCTORS WHO HAVE HELPED SOME OF OUR MEMBERS FIND SOLUTIONS TO EAGLES OR WHO SOME OF OUR MEMBERS HAVE HEARD OF. The list is not exhaustive. The intent is to provide a starting point for those of us looking for solutions. THESE ARE NOT RECOMMENDATIONS! Some of these doctors have worked for some members, but not others. Please use your own judgement when determining which doctor to use. Alabama: •Dr Joseph Brigance, 201 Whitespo…


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Hi Newuserhere,

You actually sent this to me as a private message but I see you also posted it on the forum which is fine.

Your symptoms are all typical of ES & can be caused by irritation of the vascular nerves I mentioned in my welcome email to you. For example the pain around your ear, pain in your teeth, ringing/fullness in ear are likely caused by the trigeminal nerve & maybe the facial nerve, your stiff, sore neck is from the accessory nerve & the feelings in your throat com from the vagus & glossopharyngeal nerves. Burning pain is nerve pain by definition. If you Google the nerves I mentioned & look at where they are located, it will help to explain your symptoms. Also watching the videos I suggested will help, too. The nerves I mentioned are all commonly affected by ES & are the cause of many ES symptoms.

Eagle Syndrome symptoms can come on suddenly. Mine came on as a pain in the front of my neck but there was nothing there. I finally found a lump under my jaw that made my neck hurt when I pressed on it. Our nerves are funny things in the way they can cause pain away from where the problem is.

You’ll need to get a CT scan of your neck from the hyoid bone to skull base with your doctor requesting the radiologist to look for Eagle Syndrome.

To upload your panoramic x-ray, click on the icon that is an up-arrow w/ a bar under it. That takes you to a page where you can upload the image from your computer desktop. Just follow the prompts on the upload page. If you still have trouble let me know & I’ll try to give you more detailed instructions.

Thank you for your response.
I do have some small lump in the neck which my PCP thought as a cyst and ordered neck ultrasound. No abnormalities found.
I have small bump or lump on the side of the neck and in the jaw under ear. It hurts to touch. I have burning pain in the jaw and neck. My dentist said it could be tmjd. It’s confusing. I don’t know whom to consult further.

He referred me to tmj specialist dentist. Whether tmj specialist will check eagles?

I am not able to upload the images. It says , " sorry could not upload media in this post". How to add images?

Edit to add: I am able to add it here. Not in my original post.

In some pano x-rays, the styloids are very visible. I’m struggling to see anything that looks like a styloid process in yours. That doesn’t mean they aren’t there but that my lack of experience is making them difficult for me to see. Any ENT you see can refer you for a CT scan for ES diagnosis. You can ask for that if it’s not offered to you when you see the ENT at your appt. Your PCP could also refer you for it but it makes more sense to wait & get it done by a doctor who might be able to help you. I sent you information already about what kinds of doctors take care of ES so you can refer back to that email. Dr. Petruzzelli is the only doctor we have listed for your state at the moment. That doesn’t mean there aren’t others who know about ES. It just means that his name is the only one that’s been given to us by a forum member for whom he’s done surgery. Doctors’ names are added to our list once we have a referral from a forum member who’s had a successful ES surgery.

The lump you feel under your jaw could be your styloid. That’s where I felt mine on one side & under my ear on the other side. I was originally diagnosed w/ a clogged salivary gland. :joy:

I expect other members will post information that may help you.

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Thank you. it hurts to touch those spots. I saw a physical therapist and they said it’s like muscle knots and I have tmjd. So it’s confusing.
Whether 3d cbct scan taken at the dentist office will be helpful for diagnosis?

Whether an oral surgeon will be able to diagnose? I asked my primary doctor about eagles syndrome. He telling me to see a neurologist to rule out trigeminal neuralgia and doesn’t talk about eagles at all. I mailed him again and no response about it. So, I can’t expect more from him. I feel so helpless.

I am going to see a tmj specialist to see if I have tmjd. I have burning pain in the jaw under earlobe and it hurts to touch. I have small lump in the side of the neck.

Did you have surgery? How long does it take for you to get the proper diagnosis?

I had 2 surgeries - one for each side. I saw Dr. Samji in CA. I’m fortunate to live near his office & the surgery center he uses. He’s the most experience ES surgeon in the US having done close to 500 ES surgeries. He did a great job. I was also fortunate that the first ENT doctor I went to diagnosed me w/ ES right away & had me get a CT scan to confirm it. I did not have him do my surgeries because I went to Dr. Samji for a second opinion & preferred his surgical strategy & greater level of experience w/ ES than my diagnosing doctor had.

My surgeries were in 2014 & 2015. I was functional by 2 weeks post op & my energy returned at the 2 month mark after each surgery. It took close to a year for all my nerve issues & ES symptoms to subside after each surgery. At the two month mark, I felt pretty normal. It’s just that symptoms continue to come & go as healing occurs. Also, with bilateral ES the remaining styloid often causes symptoms to flare up once the first styloid is removed so full recovery doesn’t happen, in most cases, until both styloids are gone.

There are some different density lines behind the jaw, that might be calcified ligaments, but again I’m not a doctor to say that confidently.
As Isaiah mentioned, in this pano it is really hard to see if there is any anomaly with styloid processes.
I highlighted those spots with yellow lines. Between them you can see some something that looks like it’s attached to the hyoid bone and goes up, hiding behind the jaw.

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Did you see something in other 2 pan x-rays?

What should be done for the diagnosis? Whether cbct scan of jaw taken at dentist office help?

Newuserhere -
You will need to have a CT scan of the area between your hyoid bone & skull base to get a diagnosis. The pano x-ray does not show all that’s needed to be viewed - i.e. styloids & stylohyoid ligaments - in order to make a solid diagnosis. You can get a referral for a CT scan to diagnose ES from an ENT doctor.

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I think a CT scan of the head/neck, with or without contrast would make things clear. Re CBCT I have no idea, sorry…
On the other two panos unfortunately the view is really obscured, only the one that I put the markings on has something suspicious to me.

vdm,

Thank you for your opinion. I can see what you’re talking about & missed that when I was viewing the x-rays. Still I agree, for whatever reason, the styloids & ligaments (if calcified) are just not plainly visible in these pics.