The thought has occurred to me that we should spread the word. I am hoping that we all do this, but for anyone new and all other members, I want to suggest something. First, DO NOT say EAGLES syndrome. The doctors have rarely heard of this. They have heard of EAGLE BARRETT Syndrome. That is a baby born without all of it's necessary stomach.(You can research for accuracy, I may not have it medically correct)
SO APPROACH them with "ELONGATED TEMPORAL STYLOID PROCESS" That will always get you in the ball park with the doctor. The doctor may then be able to find the problem because sometimes it is the stylohyoid process or the hyoid bone, but at least we get them thinking in the right direction. They know the anatomy, but not the NAME of the syndrome. There is NO SPECIFIC CODE IN THE MEDICAL DATABASE FOR EAGLES SYNDROME. I think it is usually coded something like facial bone,cartilage, ligagment other. Some of you in the medical profession can more readily tell me the code. I have it in my files somewhere.
We all know that our disease is often diagnosed as TMJ, facial neuralgia, fibromyalgia and other diseases way before we get a diagnosis.
Therefore, I have hand delivered copies of my surgery report and pictures to all my dentists, oral surgeons, periodontists, ENT doctor, general practitioner and will bring to any neurologist or neurosurgeon that I visit. One doctor, replacing my periodontist for my visit, was amazed at my problem, and asked for the title of our forum. My guess is that someone in his circle of friends or family has a rare disease. My GP asked for my help in entering it on her computer because she could not find the code.
Also, ask your surgeons to take pictures of the surgery and the removed structure. I think pictures are best because they become part of your permanent record and the doctors usually put them on a ruler for size accuracy.
The thing that I think impressed my doctors most is the picture of the actual bone that was removed.
A picture tells a great deal. The C T scans can be more easily dismissed but a surgical report and a picture of the removed structure are compelling.
Some of my doctors are quite interested in having this in my folder, and ask real questions that will make a difference hopefully to other patients. Others, I fear just take the information because I ask them, but nevertheless, they heard about it from us.
Always get the entire report and picture from your surgeon and make copies, and give them to your other doctors in the examining room as their records. That way, you still have your original and you know the doctor actually saw this record.
I never give them to anyone but the doctor. I don't want them to hit a trash can before the doctor sees them.
If you are braver than I and don't mind doing this, it might also help to bring your surgery reports to the doctors who misdiagnosed you. It takes a quieter, calmer person than I to do this. My frustration and anger keeps me from being able to do this in a professional, reasonable manner and I don't want any more negative entries in my file.
If each of us brings the evidence to all our doctors and we each reach 5 doctors then we have educated almost 2500 doctors. Eventually, this will help us and future patients.