I have not been diagnosed yet but after doing some research & not knowing my issue for years I think ES might be a match…
That being said I’d like to share my story and would love to get some insight from some of you guys.
It started with chronic tonsillitis about 4 years ago. I went through 5-6 episodes back to back before my ENT agreed on taking my tonsils out. After surgery I had noticed left side throat pain, rawness at the base of my tongue. Since then I have only ever thought about this discomfort, I feel tightness on my left side accompanied by a swollen lymph node, and once in a while I will have discomfort in my left ear and sometimes a feeling a a hot sensation by my lymph node.
Over the past 3 years I have had all sorts of test done - blood work, CT scan, sleep apnea test, ultrasound, and even a lymph node biopsy. None of these tests proved anything for my case, the biopsy showed a benign lymph node that was inflamed a bit.
So I went to see another ENT and she noticed I had some leftover tonsil tissue that had been missed in the first surgery, she mentioned it could be the issue. So of course I am willing to do anything to get my life back, I said okay let’s do this!! I am now almost fully recovered from my second tonsillectomy and am feeling the same issues as before.
I started to research my symptoms more in depth on google and came across ES. I’m not sure this is my problem, but all that I’ve been through I would atleast like to know WHAT it is that I have been dealing with all these years.
I will make a follow up appointment with my ENT sometime next week and plan on bringing up ES to see if she has any knowledge of it.
I hope to get some insight / symptom confirmation from you beautiful people!!
Hi there, welcome to the forum! You’ll find loads of support and experiences here! The folks here are so kind and helpful!
Symptoms aren’t always cut & dry. My recommendation would be to request a CT scan to specificity look at your styloids and request a measurement. However, measurements may not be super accurate. Generally speaking, 2.5mm is considered normal but curvature and thickness can definitely impact things.
You can also look at the doctor list here to see if there’s a doctor near you who is experienced with ES. This will definitely work to your benefit since it seems there are so few doctors who are experienced enough in diagnosing and treating ES, which seems to be half the frustration on the road to diagnosis.
Okay a CT scan is something I will have to request. Also, if anyone has come across this issue after a tonsillectomy on this forum I’d love to talk. I know i’ve read its rare occurrence after the surgery. Thanks for the reply
Hi That Bro Joe,
I was able to accurately and successfully self diagnose ES before obtaining CT scans of my elongated styloids. According to the medical literature, if you palpate intraorally the area of tissue just behind your tonsil and feel a pointy hard, protruding bone, that is a styloid process. Details on how I did this - either wash your hands super well or put on some exam gloves and then reach your pointer finger along the side of your cheek, past your teeth and to the tonsil in the back. (Going to the side instead of centrally to the throat, hopefully will reduce the chances of triggering a gag reflex.) Then carefully and gently probe past the tonsil (or past where your tonsils were) and try to seek out the tip of the styloid. It is hard and pointy and doesn’t move (fixed) when you touch it - it basically feels like the tip of a pinkie finger. According the the medical literature, if a doctor examines a patient and feels this bone in the patient’s throat and then gently presses on it and the patient feels pain and pressure, similar to what they have been suffering from, then “the diagnosis is Eagle’s syndrome until proven otherwise.” This was the same examination my local ENT ES surgeon did to confirm the diagnosis as well. (Key word here is GENTLY pressing as these are thin bones and can break off). However, getting appropriate imaging to confirm the long styloids is key to be able to obtain surgical treatment.
My self exam revealed the pointy styloids could be palpated intraorally on both sides, but only my right one was tender when pressed - this was my symptomatic side. The left one is not tender. The CT scan a few months later showed the right was a little over 5 cm in length and the left one was almost 5 cm, so both are abnormally long and diagnostic of ES.
As an aside, another ENT, who is not an ES surgeon, completely missed this diagnosis in me a month prior to my own ‘discovery’ and did not do this type of exam, only a scope down my nose, which apparently does not show the problem. So FYI - it seems that ENTs have quite variable experience / knowledge with this rare condition.
Good luck to you sorting out your problem - and you are right it is a frustrating and difficult process to get the diagnosis. Sending positive vibes your way - it is not easy! Hang in there!!!
Definitely I’d try to get a CT of your head & neck done, & request that it’s evaluated for ES, so that they check the length of the styloid processes & look for any calcifications on the stylo-hyoid ligaments.
Tonsillectomy is a known cause of ES, quite a few members have had that in the past, neck trauma is another common cause. And swollen lymph nodes are often noticed too.
I hope that you can get to the bottom of what’s causing your symptoms.