ES Information:
How is ES diagnosed, and what is the best scan to diagnose ES?
Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used are personal experiences, LivingWithTheEagle members’ experiences, and research from professional publications (some of the articles can’t be read fully unless subscribed to). Many thanks to heidemt for her research and contribution, and for her example of being your own advocate and not giving up. Members are encouraged to seek medical opinion and these pages are not intended to replace that. Members are also encouraged to research more for themselves- there is more research available but with the limitation of time and neck pain, this was the best that I could do! Past discussions are useful sources of info as well; search whatever the subject is, and you’ll often find someone who’s been through it too!
There is often confusion about the different sorts of scans available, and which ones are the best for diagnosis, so here goes with a layman’s guide:
+A CT scan with contrast is a CT using a dye given through a vein to make specific organs, blood vessels and/or tissue types ‘stand out’ with more image contrast to better show the presence of disease or injury. So a CT contrast highlights specific areas of the CT image or ‘dyes’ it. This is also known as a CT Venogram, and is particularly useful for looking at the blood vessels if vascular ES is suspected.
+A 3D CT scan uses data from several x-ray images of structures, and using computer technology converts/ renders them into 3 D images. It is particularly useful for getting detailed 3D images of soft tissues and blood vessels. Calcified ligaments and elongated styloids should show up well, as well as the hyoid bone.
Software for converting CT or MRI’s into 3D models can be downloaded from the internet. (Member mt83 suggested always getting a CD copy and gave an explanation of this in a discussion):
Aussie 77/ Tiagito78 suggested a link to this website for software: http://svn.softwarepublico.gov.br/trac/invesalius
and also Snappleofdiscord has written a tutorial about how to use one of the programmes:
Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial
Also RedPill gave some helpful suggestions with getting CT’s re-examined:
Also Southern_Rancher has found another program: http://m.radiantviewer.com in this discussion : Finally Diagnosed after 2 1/2 years - #22 by Jules
+Cone Beam CT- this is a CT where the images are divergent, narrowing into a cone. A scanner revolves around the patient’s head to take the x-rays, and these are formed into a 3D image by computer software. This is used more by dentists, but is good for diagnosis.
+MRI’s - Magnetic Resonance Imaging, uses strong magnet and radio frequency waves to generate images. Again they are good for looking at soft tissue structures, but don’t always show calcified styloids/ ligaments as well. They can also be useful for ruling out other medical conditions which might be causing neck or facial pain, and don’t use radiation.
+MRA scan - Magnetic Resonance Angiogram, is an MRI scan using dye again in the blood vessels to highlight any abnormality with the arteries or veins in the neck.
+Panoramic X-Ray- also known as a Panorex or FMX (Full Mouth X-ray). The x-ray rotates round your head and shows in one picture the whole jaw, so all teeth and surrounding bones. Jaw joints, nasal sinuses and the mandibular nerve can also be seen, plus styloid processes.
+Doppler ultrasound can also be used to detect any problems with blood flow in the carotid arteries.
+Normal X-rays are not good to diagnose ES. For example, Annika Isberg, in her book Temporomandibular Joint Dysfunction, A Practical Guide, suggested that on an X-ray (radiograph) a portion of calcified ligament might be missed if it lies medial to the imaged layer.
Most research suggests that a 3D CT is the best scan for diagnosing ES, as the styloid processes can be seen clearly in relation to the other anatomical structures of the head and neck. Not only can the length of the styloid process can be measured, but also the angulation. This also makes it useful for a surgeon to plan the surgery. (Savranlar A, Lokman U, Mehmet BU, et al.)
Some doctors also like to palpate the area of the styloid process through the tonsil or tonsillar fossa, and either see if this causes pain, or to inject the tonsillar area and the anterior pillar with a local anesthetic to see if symptoms are relieved, so apparently confirming ES. It should be possible to feel an elongated styloid process by careful intraoral palpation, placing the index finger in the tonsillar fossa and applying gentle pressure (Montalbetti et al., 1995)
(Note by Heidemt - it is NOT always possible to feel the styloid. Sometimes people have styloids that grow at an angle so that it can’t be felt. It’s not common, but it has been the experience of several forum members.)
If pain is reproduced by palpation and either referred to the ear, face, or head, the diagnosis of an elongated styloid process is very likely. A styloid process of normal length is usually not palpable. http://www.saudidentaljournal.com/article/S1013-9052(10)00094-5/fulltext1
The authors of the report SHCS (Candice C. Colby, MD; John M. Del Gaudio,MD in their paper ‘Stylohyoid Complex Syndrome- A New Diagnostic Classification’) suggest that it is more helpful to palpate the components of the Stylohyoid Complex while the patient performs cervical and oral movements to try to reproduce and localize the pain, and use this alongside a 3D CT. They believe that an injection of local anesthetic isn’t helpful as a diagnostic tool because it won’t differentiate between SHCS and conditions like Glossopharyngeal Neuralgia.
It’s also worth noting that in different mediums the styloid process can be difficult to measure accurately/ measurement varies, so this could be why sometimes members have found that styloid processes are measured at one length and are much larger when they’re removed.
Some members have asked if it’s possible to see any compression on the nerves with any scans. Smaller nerves don’t show up on scans, but there is info on the Ben’s friends TN site about a new type of more detailed MRI, called a Fiesta MRI, which can show compression of smaller nerves. This has been used to diagnose compression by blood vessels onto nerves in the same area of the base of skull, but as far as I’m aware never to show any compression by SP’s. It would be interesting to see if this would be possible!
Here’s a link to the TN site and more info on Fiesta MRI: http://www.livingwithtn.org/forum/topics/fiesta-or-mri
There have been many discussions about how to get diagnosed. The consensus seems to be to get a 3D CT done, asking the radiologists specifically to look for elongated styloid processes, and any calcification of the ligaments. Make sure you get a copy of the report, and if possible a copy of the scan, so that these can be sent to another doctor if necessary.
There is a list on this site of doctors familiar with ES, so it can be helpful to get in touch with their offices and ask about an appointment. Some doctors will review scans/ reports without the need for a visit, so this is worth checking out, and also to see what scan/ info they will require. See the discussio: CT neck non-contrast "styloid protocol"? for more info.
If there are no doctors on the list in your area (you may well have to be prepared to travel!), it is worth looking into either a:
+skull base surgeon,
+otolaryngolist,
+vascular surgeon,
+neurosurgeon,
+or an oncologist working in this area.
One member has also paid to get their scan reviewed at https://www.secondopinions.com/ when the radiologists failed to spot ES. Whether doctors will consider a report from here though I have no idea, so I’m not promoting the site, and would suggest checking it out further before paying for any service.
A word of encouragement form one of our members:
