The forum is a list of “discussions” (or “topics”, “conversations”, “threads”). Any registered member can create a new discussion. Each of them has a “topic line”/“subject”, and list of messages (“posts”, “replies”) posted by the members under the same discussion. Generally it is advised to keep the “conversation” on-topic, which means, not to deviate from the subject too much, not hi-jack the discussion by starting posting not-related messages into existing discussion instead of starting a new discussion.

However, due to the nature of the software used to implement the forum (the software is the open-source “Discourse”), the way the conversations are orgnanised may look a bit chaotic, and it might be difficult to navigate around.

This FAQ attempts to improve the situation by 1) providing answers to the most commonly posted questions, 2) providing list of links to discussions containing valuable information, as the old but very useful discussions often quickly get out of sight

At the bottom right corner of the Home screen (accessible by clicking on butterfly avatar in upper left corner of this page or https://forum.livingwitheagle.org), click on huge + sign, enter the title (subject) of the topic, and choose the category (use General if unsure).
Write your post and click “Create topic”. Use the text editing tools to make text bold, italic, or upload a picture.
The forum is powered by the “Discourse” software, so the advanced text editing features implemented by “Discourse” are selectively available for use, which also means limited set of BBCode (visit BBCode or phpBB for more details).

New members might be unable to upload pictures due to the new member restrictions, and need to “earn” certain “trust” level by engaging into meaningful discussions. In case it is very important and you absolutely must upload the picture(s) before the “trust” is earned, contact one of the forum moderators.

Click on the name or avatar of the user found above a post the user has made. This will take you to a page where you can start a private message with that person. Alternatively, click on the magnifying glass image in the upper right of this page, & type the user’s name into the search box that comes up. Select the entry that has the user’s name & avatar. That will take you to that person’s profile page where you can click on the blue oval that says MESSAGE to start a PM.

This forum is public which means most of the content (except the private messages) is visible to anyone online with or without registration. Therefore, it is important to use common-sense and general best online safery practices when using the forum. That includes but not limited to:

• use a username that does not reveal your real name. Use a strong password
• don’t reveal too much in your bio
• be careful of what you post on the forum, as the information will be seen by anyone online and will remain forever archived by variety of “Internet archive” websites
• be careful what is in the images you share on the forum, as the radiological images sometimes may contain name, age, and other personal information
• never reveal your personal information to people you don’t explicitly trust, even through personal messages
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• be cautious of people asking you to visit certain websites
• report suspicious content by flagging the post (use “flag” icon under the specific post, which might be hidden under tripple dot sub-menu)

There are multiple ways of doing this. One is to use the search function on the forum (top-right corner has the magnifying glass button, type in the keywords and hope for the best). Another is to use Google with “site” parameter and specifying “forum.livingwitheagle.org” as the site (visit the relevant Google page for more information, or use “Advanced search” Google page). Finally, by visiting particular member’s profile, it’s possible to find the messages posted by that member.

• AAI
  Atlanto-Axial Instability (C1-C2)
• AOI
  Atlanto-Occipital Instability (C0-C1)
• C0
  Often refers to the occiput (skull bone sitting on the spine), often used informally
• C1 - C7
  Cervical spine (neck) vertebrae, but sometimes might refer to spinal nerves (also there is C8 nerve, but not C8 vertebra)
• CCA
  Common Carotid Artery
• CCI
  Cranio-Cervical Instability
• Contrast
  A special liquid substance injected into the artery/vein/joint to improve visibility on MRI/CT imaging. MRI and CT scans use very different contrast solutions with different content, properties, mechanism of action, and possible side effects
• CFS
  Chronic Fatigue Syndrome
• CSF
  Cerebrospinal Fluid
• CT, CTA, CTV
  Computed Tomography
  Computed Tomography Angiogram
  Computed Tomography Venogram
• CTD
  Connective Tissue Disorder
• DICOM
  Digital imaging format used for radiology. They can be recorded on a CD/DVD/USB memory stick/computer, or uploaded to the Internet
• DICOM viewer/DICOM software
  A generic name for a class of software/programs/systems to view/analyse/manipulate DICOM images
• Doppler
  Doppler Ultrasound/Ultrasonography
• ECA
  External Carotid Artery
• EDS
  Ehlers-Danlos Syndrome
• ES
  Eagle (or Eagle’s) Syndrome (named after Watt W. Eagle)
• ICA
  Internal Carotid Artery
• IIH
  Idiopathic Intracranial Hypertension
• IJV
  Internal Jugular Vein (a major neck vein)
• hEDS
  Most common EDS variant (hypermobile)
• L1 - L5
  Lumbar (lower back) vertebrae from 1 to 5 (some people may have 4 or 6 lumbar vertebrae). They start just below the thoracic vertebrae
• MCAS
  Mast Cell Activation Syndrome
• ME/CFS
  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
• MRI, MRA, MRV
  Magnetic Resonance Imaging
  Magnetic Resonance [Imaging] Angiogram
  Magnetic Resonance [Imaging] Venogram
• OTC
  Occult Tethered [Spinal] Cord
• POTS
  Postural Orthostatic Tachycardia Syndrome
• SCM
  Sternocleidomastoid (a major neck muscle)
• SI
  Sacroiliac [joint] - the place where sacrum meets pelvis
• SH ligament
  Stylohyoid Ligament
• SP
  [Temporal] Styloid Process
• T1 - T12
  Thoracic (“back”) vertebrae from 1 to 12. They start just below the neck and have ribs
• TC
  Tethered [Spinal] Cord
• TIA
  Transient Ischemic Attack (“micro-stroke”)
• TMJ
  Temporomandibular Joint (the main jaw joint)
• TMJD, TMD
  TMJ disorder
• TN
  Trigeminal Neuralgia
• TOS
  Thoracic Outlet Syndrome
• US
  Ultrasound

CT, CTA, CTV, MRI, MRA, MRV, Panoramic X-ray, regular X-ray, Ultrasound and Cerebral Angiography/Venography can be useful to greater or lesser extent when diagnosing various types of Eagle’s syndrome.

• Head/neck CT would show the bones and soft tissue, and is the minimum to properly visualise the elongated temporal styloid processes, calcified stylohyoid ligaments, or other calcifications/ossifications. The main risk is the significant amount of radiation.

• CTA, CTV, or CT with contrast (“dye”) would also show the vascular structures (arteries and veins) in addition to what is seen on a regular CT. However, it is more risky as it also includes injecting iodine-based contrast media (“dye”) into the vascular system (with all the associated risks of this type of contrast). This type of scan is perhaps the best as it shows where the blood flow may be restricted.

• CBCT (ConeBeam CT scan) might be useful if it covers the area of styloid processes. Some dental clinics have the CBCT equipment and can re-create 3D images.

• Sometimes a panoramic X-ray (aka pano, ortopantomogram, dental panoramic photo) taken at the dentist’s office may be sufficient to note the elongated styloid processes. However, to properly estimate the course of the styloid process or its effects is quite difficult if not impossible, therefore it’s unlikely that ENT or other doctors would give the diagnosis based solely on this type of imaging.

• Plain x-ray films (aka regular head/neck x-ray) are usually too indecisive, though in some cases open-mouth view might show the styloid processes, especially when they are thick and grow at unusual angle. However, in many cases the styloid processes may remain completely “obscured” by the “opaque” structures like mandible and spine and thus remain undiagnosed even if present.

• Dynamic Doppler Ultrasound imaging may show whether the major blood vessels feeding/draining the brain (Internal Carotid Artery/ICA, Internal Jugular Vein/IJV etc.) are patent and/or have good blood flow velocities. However, that should be seen as a complimentary method as not many ultrasound radiologists are knowledgeable to assess the Eagle-syndrome related vascular abnormalities.

• MRI, MRA, MRV imaging are perhaps less effective to assess the solid structures like temporal styloid processes, small calcified ligaments, but might be very effective to rule out other pathologies. MRI and MRA without contrast are considered very safe imaging methods (though they also have some risks). MRI/MRA with contrast and MRV (which almost always uses contrast) have additional risks caused by Gadolinium-based contrast media (GBCA) injected into the bloodstream. While statistically number of immediate serious adverse reactions is very low, however, in recent years potential long-term toxicity of GBCAs is more and more widely recognised.

• Cerebral Angiography/Venography is perhaps the riskiest method, but also might be the most informative in vascular Eagle’s syndrome cases. It can show hemodynamics and various vascular compressions in real time, however, it also has the highest risk of severe adverse effects. First, the dose of radiation is quite high. Second, amount of iodine-based contrast is also significant. Third, it is an invasive procedure, performed using a catheter inserted and navigated all the way up to the neck, often performed under light sedation, and fourth, there is a non-negligible risk of stroke due to the nature of the procedure.

CT means Computed Tomography. An x-ray beam rotates around the patient lying on the scanner’s bed, like a spiral, and then the computer re-creates a set of “views” (two- or three-dimensional images/slices). There are various “protocols” (how the scan is performed from the technical perspective) to maximise gains of the imaging depending on purpose.
CTA means CT Angiography. CTV means CT Venography.
However, often the CTA shows veins too, thus.
On request, radiology clinics/hospitals can provide the patient with a CD/DVD/USB stick containing those CT scan images. Alternatively, some institutions may provide online access to the images.

To read and understand the relevant CT scan images, two approaches can be used. The first, “opportunistic”, is just to open the images with the image viewer program and try to figure out what is what. After all, perhaps everyone has seen a plain Xray, and to some extend, the CT images can be seen in a similar way. Feel free to skip all the way down to the last “step” with links to Radiopaedia containing annotated CT scan images.

Another, more analytical approach, is to learn some anatomy and CT imaging principles to fully explore the information gathered by the CT scanner during the scan.

The first step would be to gain basic understanding of the anatomy, in this case head/neck anatomy. A few resources (not necessarily the best available on the internet) are these:

• Zygote Body 3D
• Sam Webster - Base of skull anatomy, cranial nerves and blood vessels
• Sam Webster - Major blood vessels of the neck
• Sam Webster - Bones of the skull and more skull anatomy
• AANS - Head and Neck Anatomy for Neurosurgeons

Bear in mind, real humans differ each from another, and have so called “anatomical variations” of various anatomical structures, which means that certain things might slightly (or sometimes significantly) differ from the “perfect” anatomical model.

Then, it might be useful to learn a bit how the CT scanner works and its abilities and limitations, to learn what the resulting images show, what the “bright” (high-intensity signal) and what the “dark” (low-intensity signal) areas on those images are, what the various planes mean (axial, sagittal, coronal), why sometimes contrast media is injected into the vein, and other things.

• NIBIB Gov - How Does a CT Scan Work?
• Navigating Radiology - A Practical Introduction to CT
• Radiology Frameworks - CT Imaging: Basic Technical Concepts

The next step would be to learn basics of some software used to view/analyse radiological images (often the CD/USB that the images come with, already contains some software. Some clinics upload the images to the Internet). See the FAQ question about the software to browse/read images (TODO).

And finally, these brilliant resources on the radiopaedia.org website show how to identify various anatomical structures:

• Annotated neck CT
• Annotated head CT
• Annotated CT angiogram
• Normal head CTA
• LearnNeuroradiology - Head and neck anatomy landmarks

On computers with Windows OS, one of the most user-friendly software is RadiANT DICOM Viewer: DICOM Viewer - RadiAnt | Products | RadiAnt DICOM Viewer. For Mac users Bee Dicom Viewer App is a good resource: ‎Bee DICOM Viewer on the Mac App Store. Horos (Horos Mobile - Horos Project), OsiriX viewers work on various Apple products.

See this topic for more information: RadiANT DICOM Viewer tutorial

Some of the doctors/surgeons familiar with the Eagles syndrome are mentioned in these topics:

• Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle

See this topic: Doctors Who Have Authored Research Papers

Surgery may worsen the existing symptoms, or create new ones, especially if performed by inexperienced or less skilled surgeon. Also, bleeding or nerve damage causing temporary or permanent neurological deficits (e.g. facial numbness or paralysis, neuralgic pain) may occur.

There have been a few documented cases when elongated styloid processes caused arterial dissection (certain type of damage to the artery feeding the brain) leading to stroke and/or death.

A good comprehensive overview is here: ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular and here: ES Information: Common Symptoms And Possible Explanations For Them

The short answer: we don’t know (yet), though there are multiple theories.
The long answer: there are multiple proposed models, some of them rely on the fact that calcification might happen as a result of prolonged inflammation, which can be caused by multiple factors, including infection, tonsillectomy, acute or chronic neck trauma/injury, surgeries in the neck area etc. Also there are anecdotal evidence of elongated styloids going in generations, and also occurring in people with less stable necks (caused by hypermobility, neck injuries/whiplashes, EDS etc) possibly as a result of body’s attempt to stabilise the neck.
Also see this topic: ES Information: What Causes ES?

Information on the Internet is abundant and just a google away, including high quality diagrams, lectures and interactive models.
Some resources are listed here: List of my favourite resources on YouTube to learn anatomy - #9 by vdm
A good interactive human body model is here: https://www.zygotebody.com. One of the most famous online radiology resources is https://radiopaedia.org
Skull base anatomy topic: Skull base anatomy and reading CT

There are some videos where surgeons record live surgeries: Any good surgery videos?
Warning: graphic content

The short answer is that “classic” ES has quite strict criteria for diagnosis, which means symptoms must match radiological findings, as many people have asymptomatic (painless) elongated styloids and thus do not qualify for ES diagnosis.
However, that has been changing lately as more and more research is being done in this field and “new” vascular (arterial and/or venous) “versions” of Eagle’s syndrome get more and more attention.
It can be diagnosed by ENT doctors, maxillofacial surgeons, neurologists, neurosurgeons, radiologists, dentists, chiropractors, osteopaths and even family doctors/general practitioners. It is worth mentioning that there is a lot of scepticism and even ignorance if not medical gaslighting related to the diagnosis of Eagle’s syndrome, and some people suffer for years until receiving adequate help.
Also see this topic: ES Information: How Is ES Diagnosed

Answer goes here