Info for Patients

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!! 😉

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, headaches ect.), you could ask your doctor to make a C.T. scan with contrast medium of your head and throat region. Panorama X-Ray would be another option, but a C.T. scan is more detailed. 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.

Please be aware that there exist two different types of Eagle-Syndrome: classic and vascular.

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

  • Surgeries/Styloidectomies (to remove the long bones from my throat; yet it is a very risky intervention that demands a lot of expertise from the surgeon, plus it must be well considered if a surgery is indicated and which approach is better – intraoral or extraoral; it would probably be better to choose the extraoral approach (from the outside); in my case the intraoral approach led to insufficient success and postoperative defect due to reduced field of vision during the intervention and postsurgical intraoral scar tissues ect.)

After Surgeries:

  • Osteopathy
  • Cranio Sacral Therapy (Upledger)
  • Mag. Kirstin Bauer – Sports-Osteopathy
  • Infusions
  • Neuraltherapy
  • Electro-Acupuncture

Laser Therapy: Weber Medical from Germany (Dr. Michael Weber and Robert Weber MSC)

Prof. Dr. Harry von Piekartz from the Netherlands – Craniomandibular Orofacial Manual Therapy

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, neck surgeon, dentist, orthodontist, neurologist, ect.

Online Support Groups

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

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

And another Support Group called Living with Eagle

List of hospitals/doctors who could probably provide information on Eagle-Syndrome:

(Please do your own research in addition and consult several experts for safety reasons)

Region Austria & Germany:

  • AKH Wien
  • Dr. Nils Heim (Universitätsklinikum Bonn)
  • Dr. Stefan Meng (Hanusch Krankenhaus Wien)
  • Prof. Peter Franz (Klinik Donaustadt Wien)

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:

Please excuse that I cannot answer to every medical request. Additionnally, 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.