I am very excited to have found this community. I am not officially diagnosed with ES, I actually have an appointment with an ENT tomorrow.
I am posting to seek some insight into the symptoms I am having. I can be an alarmist/hypochondriac when it comes to medical issues but I know what I am feeling/going through is real and it has been a challenge the last few months.
The list of symptoms I have been dealing with are:
Random surges of pain in the back of the throat (mainly left side), the roof of my mouth, jaw/gum line
Feeling of foreign object stuck in the throat
Extremely painful feelings in the neck when laying a certain way
Painful surges in back of throat when bending down/moving a certain way
Feeling like something is poking me in the back of the throat on the left side
Random surges of pain that shoots through my face and into the ear canal
Random tongue/mouth pain
I have been dealing with these symptoms for the last three months and it can be debilitating for me. Especially because I already deal with health anxiety and the feeling of something stuck in my throat sends me over the edge.
From what I have listed, does it sound like I could be dealing with ES?
At first I thought that it might be Glossapharengyl Neuralgia but after looking into it further I think I am dealing with ES.
Sorry for the long post, I am just frustrated and want to know what is wrong with me.
Hi Becca, welcome to the forum.
-I am semi new to Eagles Syndrome but all of those symptoms seem to be symptoms that many people on the site have had. I personally have almost all of your symptoms that you listed. Plus a few other neurological symptoms.
-Have you had any imaging done yet? MRI, CT, x-ray, or digital motion x rays?
Yes I have, I have elongated left styloid that is compressing my Internal jugular vein between my c1. And calcified ligament. I found mine in a CT Venogram with 3D reconstruction of my styloids. I put my image below. Do you plan on asking him about it being eagles or about any kind of images to confirm it?
Thank you for sharing your story & symptoms list. As @Calebp noted, your symptoms have all been seen w/ ES. Many of our members have started out thinking they had GN (which ES can cause, BTW), but those symptoms went away w/ the styloids.
I had the weird roof of the mouth symptoms. The roof of my mouth would randomly feel like I’d just poured scalding hot water on it. It was so extreme, I thought the skin would peel off. The pain/feeling would go away after a couple of hours, & everything would get back to normal (skin never peeled). It was quite bizarre & did disappear immediately after my first surgery.
I had bilateral ES, & until one styloid is removed, it’s hard to know which side causes which symptoms. That gets answered pretty quickly once one styloid is gone. I’m glad your symptoms seem to be unilateral.
When you see the ENT tomorrow, request a CT scan w/o contrast if you’re planning to contact Dr. Samji. That is what he requires. When contrast is added, it highlights the soft tissues in your neck which can partially mask the styloid & make getting accurate measurements difficult. Also, ask your ENT to request some 3D images along w/ the CT slices. I didn’t know to do that, but the radiology lab where my scans were done did it as a matter of course. It was really great to be able to see what was going on in my neck when I went back for my post CT follow-up. I would have had no clue if all there was to look at were the CT slices. Calebp’s image is w/ contrast. I’ll PM you a copy of one of my images.
Wow, you can totally see the elongation of the left styloid. I’m glad you were able to get the diagnosis. I’m praying my ENT will have some knowledge of ES and not just dismiss my symptoms. I’m so glad I found this forum!
Yeah It was bitter sweet to find out. Even if your ENT is dismissive, I would still ask him for the CT neck with 3D reconstruction. He may say it’s very rare and he doubts you will have it (which my ENT originally did). But if you really think it could be ES I would just tell him it would ease your mind to just know. Some Dr are ridiculously stubborn to order any images once they make up their mind.
Thank you so much for sharing your ES story with me. I really appreciate you listing the scans needed for a proper diagnosis. I sometimes have weird pains on the right side but not nearly as bad as the left. I will update you guys after my appointment tomorrow!
Hello @beccaaaaa1, I’ve been diagnosed with ES and have all of your symptoms plus a few more. The neck pain,headaches and fatigue are my worst ones. Then again the chronic congestion is pretty awful too come to think of it. Ask for a CT scan when you see your ENT if he/she doesn’t suggest it. Mine suspected ES right away so they did a scan right there and then for me, which confirmed his diagnosis. I did have to pay for it out of pocket unfortunately but it was worth the $250.00 to me just to know if I had ES or not. I’ve spent years being misdiagnosed so it’s a huge relief to know. I have experienced anxiety as well with ES so I can appreciate what you’re going through for sure. I hope your ENT can figure out what’s going on today, best of luck!
I just got back from my appointment with the ENT. He was familiar with ES and put in an order for a CT scan with & without contrast. He also asked them to specifically look at the styloid process along with one other thing.
I won’t know more until I have the CT scan done.
I am curious though, have there been cases where someone presents the symptoms of ES but ended up being diagnosed with cancer? I am trying not to spiral while I wait for the CT scan but I know it’s going to be hard.
Once I get a CT scan and know more I will update again.
Thank you all for your input and help.
That’s super good news! I’m so glad you’re getting both types of CT. All bases will be covered that way.
I do NOT know of any who’s had ES symptoms but been diagnosed w/ cancer instead. We have had several members who were concerned their symptoms were cancer, & they ended up being caused by ES.
There are other syndromes that can cause symptoms similar to ES i.e. hyoid bone syndrome & Sjögrens Syndrome. Before worrying too much about your symptoms being from something else, get that CT scan done. I bet you’ll find you have at least one elongated styloid process.
Good that the ENT is aware of ES & has ordered you the CT scans, another step forwards! I second what Isaiah says, I can’t think of anyone who has been diagnosed with cancer instead of ES; we’ve had some members who’ve had previous thyroid cancer & then ES, not instead of…I hope that helps a bit, it’s hard when you have lumps not to get concerned!
I did the CT scan and the results (According to the ENT) showed no sign of elongated styloid. However, I have read on here that even a millimeter difference in the styloid can cause problems? So maybe they didn’t see it as elongated enough to classify but the ENT said my symptoms do sound like eagle. Very frustrating.
I want to encourage you to get a second opinion. It’s not just styloid elongation that can cause ES symptoms. Even if they aren’t long, the angle the styloids are growing, how thick they are, & how pointed or twisted they are all can contribute to the styloids causing ES symptoms. Another thing that can cause ES symptoms is having calcified stylohyoid ligaments. These connect the styloid process to the hyoid bone. In some cases, people’s styloids stay normal length but the ligament calcifies, often starting from the hyoid bone & up toward the styloid process. Many doctors do not recognize a calcified stylohyoid ligament as ES but it definitely is a form of it.
I don’t know whom you saw for your appt., but you can schedule a video appt w/ Dr. Samji in San Jose, CA, or Dr. Cognetti in Philadelphia, if you don’t want to travel. Another option would be Dr. Osborne in Los Angeles as we know he has done surgery for at least one person who had calcified ligaments but not elongated styloids.
I hope this info helps. Not every doctor or radiologist reads the CT scans the same so one person may measure the styloids as being normal where another sees them as elongated. Also, many doctors don’t look for calcified ligaments. They will be visible in the CT if calcified.