I was recently, this week, diagnosed with ES. I actually had never heard of ES before my doctors appointment. After research on this site and others I am feeling a little overwhelmed with the amount of information out there and not quite sure where me and my symptoms fit in yet.
Since last August I have been having throat pain that felt like a throbbing sore throat that sometimes radiated to my ear but never became more than annoying. A few months later I had a bad cavity taken out on the same side so figured my pain was in relation to that and would clear up in time on its own. It didn’t. Fast forward 7 months later, and several doctors appointments ruling out infection I got referred to an ENT. I figured maybe I had a mild form of heart burn, as I had no other obvious symptoms. When I explained my symptoms my ENT after doing a basic visual exam palpitated the inside of my throat exactly on the spot that feels sore and on my neck/jaw area by my ear (OUCH) was able to feel what she said she believed was inflamed or calcified styloid ligaments. my throat hurt the worst it has yet the rest of the day and night after that.
Here is the strange part that I haven’t been able to find supporting information on - she said I should take antihistamines and that it would come and go in regards to the pain and that it rarely required surgery, she had done one in five years, and that allergies can make it flare up. I currently have no symptoms of allergies. On the one hand from what I’ve been reading this is a rare condition so the fact that she was able to feel it and know what it was so quickly leads me to believe she’s familiar with it - but on the other hand it seems like there should be follow up testing and I don’t really understand how the antihistamine thing would help. Maybe she is trying to rule out concurrent symptoms before doing further testing?
After reading peoples stories, I also realized there are other symptoms that I have been having that I didn’t think were related to my throat at all, such as headaches and chest tightness and mild anxiety and fog brain (which all could also be attributed to the stress of the times we’re living in right now as well as my full-time work and school schedule last year).
Right now my symptoms aren’t so debilitating but not knowing how close my styloid is to my nerves and arteries is kind of freaking me out so I think I am going to request a CT scan next week and just to ask more questions once I’ve had time to digest all this information more. Has anyone been diagnosed without imaging like this before or been prescribed antihistamines or seen improvement in symptoms from taking antihistamines?
Thanks! and thanks for sharing all this information it has been a huge help so far.
I was tentatively diagnosed w/ Eagle Syndrome in the same manner you were. My gynecologist referred me to an ENT after I pointed out a hard lump under my jaw which I thought was a clogged salivary gland. The ENT I went to was one I’d seen about 4 yrs previous for positional vertigo (perhaps an early ES symptom). I described my symptoms, he felt my lump & immediately said, “You have Eagle Syndrome,” to which I replied, “What is Eagle Syndrome?” His response was the same as what you got - calcification of the stylohyoid ligament. He sent me off for a CT scan & had me return in a week to view/discuss the results. He was overly enthusiastic when he told me I had bilateral ES and a significant case, at that. I asked what to do about it, & he said surgery is the only cure. That said, there seem to be rare few doctors, ENT & otherwise, who are familiar enough w/ ES to understand its impact on nerves & potentially also on vascular tissues. Because of this, the multitudinous symptoms that ES can produce are often dismissed even by doctors familiar w/ ES. Those who feel the symptoms can be treated w/ medication are, for the most part, wrong. There have been a very few cases where people were able to manage their symptoms over the long term using nerve pain meds. A steroid/lidocaine injection can help dull symptoms as well as diagnose ES before a CT scan is done, but the relief it gives lasts from a few hours to a few weeks at most.
I have never heard of an antihistamine being suggested as treatment for ES. Often people have stomach issues from vagus nerve irritation. This gets diagnosed as acid reflux & antacids are Rxed but they usually don’t help because acid reflux is an incorrect diagnosis.
ES surgery is major surgery & our recommendation always is to see the most experienced ES doctor possible when considering this surgery. I didn’t end up having my diagnosing doc do my surgery because I discovered this forum & its Doctors’ List & got a second opinion from a doctor w/ far more ES experience than the diagnosing doctor had.
Can’t really add much as Isaiah has pretty much covered it all! Not heard of antihistamines being a treatment either, only that several members have been misdiagnosed as having allergies causing their throat pain & being prescribed treatment for that.
A CT is best to show the styloid processes, although it doesn’t show if any nerves are being irritates/ compressed. Unless you get a CT with contrast it doesn’t show the effects on blood vessels either. It’s unusual to be diagnosed without a CT or panoramic X-ray, but the fact that she could feel them & that after the examination it set your pain off alot I think confirms that diagnosis.
As Isaiah says it’s important to see the most experienced doctor that you can…surgery can be tricky, & has some risks, recovery sometimes difficult, so you may feel that while your symptoms are not too bad you don’t need surgery, or you may decide that you need to get them out!
After you get a CT done, it’s also important to find out if it’s the styloid processes which are elongated, or the stylo-hyoid ligaments calcified (or both) as ES can be caused by either. Plus if you did opt for surgery, it’s important that your doctor understands what’s causing your symptoms & removes the right bits!
Let us now how you get on!
Thanks for your feedback and input! I just e-mailed my ENT and asked for a CT scan with contrast. I also realized after researching this past week that this could be associated with a car accident I was in last May. I had whiplash and my ES symptoms started soon after but I never got imaging for my injury as I thought it was just a bad sprain. It never occurred to me that my throat pain could be connected to my accident and neck and shoulder pain but now it’s starting to seem more and more like this is the case. For the moment I don’t think the pain is at a level where it outweighs the risk of surgery. I am hoping a scan will at least let me know if not pursuing surgery for the time being is a safe option. Thank you again for all of your help. This site is really a great resource for someone new to all this. I live in Western Washington so we are in full bloom of flowers here - although I am very doubtful antihistamines will help my ES symptoms, I don’t think it could hurt Once I get my scan I will most definitely be reaching out to folks who specialize in this for some second opinions.
Sounds like a good approach. I will tell you that if you choose to contact Dr. Samji, he will want a CT scan w/o contrast. He evaluates the CT scan himself as he has found his styloid measurements & some other assessments often differ from what a radiologist sees. Because all the vascular & soft tissues show up on a CT w/ contrast, it makes visualizing the styloids & s-h ligaments harder.
well the good thing is your doc told you about Eagles to hopefully get you on the right path but antihistamines? I can only shake my head in dismay over that one. Finding out about new diagnosis’s and all the details can be overwhelming. You are in the right place to learn and Jules and Isaiah have been the greatest teachers to all of us! A CT scan without contrast is the gold standard to diagnosis of ES.
Yes, my doctor realized it only after I asked him about the lump in my jaw, then he got a CT scan.
As far as antihistamines, I believe they help some if you are having post nasal drip or think you are. They helped me. Hindsight, I think the post nasal drip was often from inflammation around the area. Doctor did not tell me to take them for Eagles, but for allergies.
My constant post nasal drip is gone since surgeries have healed unless I really have an allergy or my arthritic jaw joint hurts.
That’s interesting. I’ve never heard of that prescribed for eagles. You might want to get another opinion and like they said have a CT. You really need to go to a head neck surgeon. Best of Luck!
Once I get my scan I will most definitely be reaching out to folks who specialize in this for some second opinions.