I just got back results from my CT scan. Here’s one finding:
Nasopharynx, Oropharynx, and Retropharynx: There is moderate elongation of the styloid process, bilaterally, consistent with Eagle Syndrome. The styloid process extends to the medial surface of the medial pterygoid muscle, bilaterally.
The thing I’m struggling with and worried about are symptoms of not being able to talk properly, and feeling like my jaw and tongue are not functioning properly. I really hope I have ES because it’s most likely operable, but I am still very nervous that I might have something like ALS. The CT scan also showed ‘subcentimeter lymph
nodes scattered throughout the neck’ - so that has me worried about cancer. Has anyone in the group had similar symptoms that proved to be ES after all?
ABSOLUTELY!!! There are many people on this forum who have lost their vocal abilities as a symptom of ES, jaw tightness, tongue dysfunction (I had jaw & tongue issues), etc.
We do have many lymph nodes in our necks. I’m not sure of the significance of “subcentimeter lymph nodes” but your doctor should be able to discuss that term with you & let you know if they are something to worry about. Lymph nodes can be biopsied, & it might be good for you to ask about having that done just to make sure you don’t have a secondary infection of some sort going on.
You could send your scans & results to Dr. Samji in CA & request a phone consult w/ him for a second opinion. He is a skull based ENT surgeon who not only specializes in ES surgery (he’s done over 200) but is also a specialist in vocal problems. I think he would be a good resource for you. Contact info is Dr. Samji’s medical assistant - kimberley @ caminoent . com or 408 227 6300 (I spaced the email & phone # out so the site software doesn’t block it).
Here is the link for an article about voice loss & Eagle Syndrome:
I hope this information encourages you & helps relieve some of your worry.
I dont think it would be cancer because i have heard other people having the same issue of swollen lymph nodes on the side of elongated styloid, and I have it too, but i am just guessing i have eagle because i havent had any tests done except CBC which is all good.
Just for your reference :
Thank you so much for this info. It is very helpful. My follow-up visit with my ENT doctor is not until 10 days from now – lots of waiting, and trying to manage my anxiety in the meantime, but this definitely helps.
Thanks for the info about lymph nodes. It’s comforting to hear that other people have had lymph issues with ES as well. I’m curious if people have noticed this symptom resolves itself after styloids are removed.