Info for Patients – Nora Sophie

Disclaimer: As I get many requests concerning my medical approach, the intention of this page is to pass on my personal experience and knowledge. Please consider that the information are based on my own case. It does not mean that the listed treatments are the best/only way to find a pain relief. No case of illness can be compared to another. Each case is different. I can give no guarantee for the topicality, correctness or completeness of the provided information. It does not substitute professional health care. So please consult a doctor! Or two! Or better four!! 😉

Looking for a personal consultation?
If you would like a one-on-one conversation to discuss your experience, ask questions, or receive insights from the perspective of a fellow Eagle Syndrome patient, please feel free to contact me to arrange an individual appointment.
I look forward to hearing from you.

Clarification/Diagnosis of Eagle-Syndrome

If you think you could suffer from Eagle-Syndrome because of different symptoms (unclear throat/head/neck/face/jaw/tongue pain, swallowing difficulties, voice problems or vascular problems like dizziness, brainfog, intracranial hypertension, headaches, fainting ect.), you could ask your doctor to make a CT scan with contrast medium of your head and throat region (CT Angio). Panorama X-Ray would be another option to get a vague impression, but a CT scan is definitely more detailed and advisable. A Department for Oral and Maxillofacial Surgery could be a good contact point. (Probably also a Department of Head and Neck Surgery/ Neurosurgery). The first step of getting the right diagnosis is to look what is causing your symptoms. Try to find out, if your styloid process is elongated/abnormally angled or your ligament ossified and probably compressing any nerves/blood vessels/anatomical structures. Note: Also keep in mind that even short styloid bones can cause problems sometimes. It depends on multiple factors.

Please be aware that there exist three different types of Eagle-Syndrome: classic type, vascular (carotid artery type) and vascular (internal jugular vein type). They are also called: Stylohyoid-Syndrome, Stylo-Carotid-Syndrome and Stylo-Jugular-Syndrome.

Here is a free programme to download, with which you can take a look at your CT scans yourself on your own notebook at home: Radiant Viewer

(Note: Informing yourself is an important issue while having a rare disease. Yet, you should discuss the pictures with a medical expert.)

Information on treatments that have already improved my condition (Bilateral Eagle-Syndrome and its secondary complications):

Here is a Guideline for people who think they could be concerned by Eagle-Syndrome:

(I created it without any claim of completeness)

Note: It’s useful to see more medical experts like ENT, especially maxillofacial surgeon, neurosurgeon, head-neck surgeon, dentist, orthodontist, neurologist, ect.

Online Support Groups

Here is a link to a Group for Austrian Eagle-Syndrome Patients that I started on Facebook

Here is a link to a Group of Patients from Germany on Facebook

Here is a link to a Group of Patients from Germany on Instagram

And here is a link to the International Support Group for Eagles

And another link to Eagle-Syndrome Group

And another Support Group called Living with Eagle

My scientific Research at the University of Vienna

I did some scientific research about the orphan disease “Eagle-Syndrome” and its social consequences at the University of Vienna. It’s the first thesis actually worldwide that investigates the socio-psychological impacts. Patients from 5 different continents took part in it. If you are interested in the quantitative study, you can read it in German or in English.

Hier geht’s zu meiner Diplomarbeit über die sozialen Folgen des Eagle-Syndroms (Deutsche Version)

English Version:

Diploma-Thesis-Eagle-Syndrome-Nora-Sophie Download

Please keep in mind that I have no medical education. I am not authorized to give clinical recommendations or advice to other patients. This page should be a general “guide” to inform, help and encourage you. YOU ARE NOT ALONE!

I hope it will help you!

Disclaimer:  The author can give no guarantee for the topicality, correctness or completeness of the provided information. Liability claims for any damages due to incorrect or incomplete information are excluded. The responsability lies at the reader. All offers are without obligation.