Educating our Doctors

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.


Amen Emma!!!

I was just having this conversation with my Mom this morning!!

I had decided to take that anger that I felt and use that energy to educate all of those that misdiagnosed me. I wasn't sure when to start as I am still so soon out of surgery and know that I still may have to do the other side. (However I am still so very hopeful!!).

I feel very strongly that if it gets on their radar and saves even just one person from going through this nightmare that we have all been living in it would be worth it!!!

Great advice on how to approach it :)

I also believe that this is not as rare as they think. I asked Dr. Samji this very question right after I woke up from surgery.

Is this really rare or rarely diagnosed?

He said that is a great question and that to him it isn't that rare and that he is diagnosing about one per week now.

He also said by the time they get to him they have already been seen by so many doctors. He said he might be the wrong person to ask......

I will also list this website for their reference as well. :)



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I was just thinking of this as well. I am thinking about after surgery to possibly contacting g the medical board in my state. Maybe we all can compile our stories and send it every state board. It is ridiculous that nobody knows what this is, the suffering we have endured. Part of me is mad as hell but the other part of me wishes to help for future undiagnosed ES patients. Just keep me posted, I really would like to help.


I just came across this post. I have every intention bringing my surgical report to each and every doc that misdiagnosed me the last 15 years. Did either of you ever end up doing that? I think it is important to educate the docs so maybe they can get it right the next time they see another person like us and not just tell us it’s tmj or acid reflux!


It's definitely a good idea to keep as much info as possible about yourself anyway- I don't know what the US is like but losing test results regularly happens in the UK! My hubby had a heart problem a few years ago, and the crucial ECG trace showing the exact problem disappeared from his notes ! (Dr's didn't believe him as it was an intermittent problem, it wasn't until he had a really bad bout and the ambulance crew got an ECG, his heart rate went up to 250 beats per minute, and they could see the evidence themselves!) Luckily he was given a copy to keep so could show it to ambulance crews and the consultant he was referred to! After he was diagnosed by the cardiac consultant, our GP, who my hubby had been to several times with this said, '0h, yes, my friend had that problem, and had the same op you need' !!!! aaah, why didn't it ring any bells then!!! So, sorry to any medical professionals on this site, it is probably nothing personal to us with ES, but across the board! I think I might have Sjogren's Syndrome too- but that fight to be referred will have to wait for another time!- and go on the Ben's Friends site for that too- the grumbles about being dismissed and not taken seriously are common in their discussions too, I'm sorry to say!

Sorry for the rant- Emma's right, we should try to educate these Docs if we're brave enough! I think if it was more known about, they would find that it's actually a lot more common than everyone realises. Thank you Emma and others on this site who have done lists and surveys which are really helpful to the rest of us to push our treatment forward. I would be stuck and in pain still without the help from this site!