Hi. I was diagnosed with eagles syndrome in may this year. I posted all my symptoms in a previous post. I’ve had a bunch of full body symptoms so ive been to a lot of doctors. I started getting jaw and neck tingling, throat pain and difficulty swallowing in may which is when i was diagnosed with bilateral eagles with calcification. Im told it extends to the base of my tongue.
I was sent to an ent surgical specialist but he does not think my symptoms are caused by eagles and since my swallowing has slighlty improved he basically dismissed me and says to see him as needed. He says the base of my tongue is weak and wants me to do excercises to help with that and see if things improve. Since its a major surgery, he does not want to jump into it withought being absolutely sure. Im really not sure how much experience he has with eagles syndrome.
I also sent all my images to Dr Nakaji. He reviewed them and said i have mild jugular compression but not enough to cause symptoms from the images i provided. Ive only had a ct with contrast and a ct angiogram. He is referring me to a neurologist for further testing.
If my Eagles is in fact not causing the symptoms, is this something thats ok to be left untreated? Does it typocally get worse over time? Im also wondering if the tongue weakness could be caused by the bones poking near the base of my tongue.
Ive been to almost every type of specialist over the last year trying to figure out what is going on. My throat symptoms come and go now and my swallowing is improving. I just don’t know what to think anymore. I wish there were more knowledgeable doctors out there.
It is normal for Dr’s to downplay symptoms and say that it is not that bad, let wait and see, try this and that. Some are not trained in ES. Some are aware of it but are not comfortable treating it. Do not get me wrong there nothing wrong with a conservative approach. But a conservative approach cannot treat anatomical (styloid compressing nerves and/or blood vessels) disease. Your symptoms are consistent with ES. If there is vascular compression with vascular symptoms in my opinion you need treatment. ES in my opinion is a progressive disease and will continue to get worse, sometimes very slowly and sometimes very rapidly. ES symptoms are like a roller coaster ride. You might even feel totally normal for a while and then it all comes back with a vengeance.
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I also sent all my images to Dr Nakaji. He reviewed them and said i have mild jugular compression but not enough to cause symptoms from the images i provided. Ive only had a ct with contrast and a ct angiogram. He is referring me to a neurologist for further testing.
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I have been seeing Dr. Nakaji referring pts and potential pts off quite a bit recently. While it is very nice of him to screen potential patients for free, I feel he is doing a disservice to patients like you and me. I too, was just told I do not have venous compression. When Nicole said that, there was silence on the line for a minute. I was floored. I ask her if he read the scans. She assured me he read the scans, he is very good at reading them and I do not have compression. He referred me to a neurologist also. I explained to her that it is obvious on the scan. I ask if I could e-mail him images showing the compression and if he would look at it. She said no. Two minutes latter, she called me back and stated I could do that. So I composed the e-mail ( had images of compressed IJV and stenosis in the right transverse sinus among other things) and sent it off. A few days later I received a phone call from Nicole. She stated he can see what I was stating. He wants me to get a venogram. Normally he sends pts he is considering treating to his IR for the angiogram according to his protocal. I do not believe he will accept me as a patient which is fine. He might be slowing down and not wanting to see as many ES patients. I feel is not right for him to state there is no venous compression and that my symptoms are not caused by the compression. He can pick and choose what patients he wants to see. However he should not mislead patients that are already searching for treatment in a highly specialized area with very few experienced surgeons. I think Dr Nakija is one of the best in the the vascular ES field. But like most Dr’s in this area the intake process of the patients and communication with them is lacking.
So the moral of the story is to keep pressing on, keep praying for guidance and direction. It is a very long process on the vascular ES side. Not as long for the neurogenic side. Expect a lot of misinformation from the untrained Drs. Study and learn as much as you can for yourself. You can post your scans and have the moderators review them to try and give you guidance. There is a list of ES Drs on the forum. Reach out to the other vascular ES Drs.
@Anissanandez - I agree with what @Rex has told you about ES & the importance of pursuing treatment before the symptoms become debilitating. Our “go to” ES surgeon in AZ, Dr. Milligan retired in 2024, but there is a note by his entry on our Doctors List that Peter Weisskopf, ENT Neurotologist, is an associate of Dr. Milligan’s & is possibly someone to see for ES. If you can get an appointment with him, you may get a different opinion & more help.
Since your IJVcompression is mild, it’s possible just having your styloids shortened will be enough to decompress them though I can’t say for sure.
This is the contact info I was able to find for Dr. Weisskopf. I hope it’s current:
I’d just like to add that there are a couple of points to consider; firstly as there are risks with the surgery, I completely agree that it’s not something to be rushed into, so a conservative approach is understandable. Equally if the styloids are irritating/ compressing/ rubbing nerves, then leaving the styloids in could potentially damage the nerve more, for example if the sheath round the nerve is broken. And also as we age, connective tissue weakens which can alter the position of the structures in the neck enough to make symptoms worse- which is why we have lots of members who have had symptoms for years but ignored them find they worsen as they get older… We do also see that symptoms vary in intensity & can come & go for no apparent reason with members, but usually get to a point where they worsen. I wish that we could say to you which symptoms are ES & that they’ll definitely go after surgery, but unfortunately we can’t. Difficult decisions…
@Anissanandez - Usually nerve involvement can be determined by the type & location of your symptoms. The nerves most often affected by elongated styloids are the trigeminal, facial, glossopharyngeal, vagus, & spinal accessory. Additionally, the vestibulocochlear, occipital & hypoglossal nerves can also cause symptoms. These are 8 of your 12 cranial nerves which all exist in & around the area where the styloids are in your neck. (Check out Two Minute Neuroscience videos on YouTube. There is one for each cranial nerve - here’s the trigeminal nerve video - https://www.youtube.com/results?search_query=2+minute+neuroscience+trigeminal+nerve)
The jaw, throat & neck tingling are likely from the trigeminal, glossopharyngeal/vagus, & spinal accessory nerves respectively. You can Google images of each nerve to see where they are in your body which will help you understand why you have the symptoms where you do.
When nerves are irritated or damaged, they can disrupt normal muscle & other soft tissue function which can cause compensation by other muscles/soft tissues which can cause compensation by still other muscles/soft tissues & so on until what starts as a seemingly small problem becomes a big problem & can affect a large part or all of the body. I suspect this may be what’s happened for you. When the spine is affected at the top (cervical spine), there is a cascading effect of compensation downward.
A FIESTA or CISS MRI will show your nerves. Not many facilities have the programs to run those types of MRIs but you can certainly see if you can get referred for a scan.