Hi everyone. So happy I found this site, as many resources online have not been able to provide me with experiences and info I have learned here. I am especially referring to the wide range of symptoms people experience.
Let me start off by saying I thought I was crazy for months. I always thought my tonsils were swollen, or my lymph nodes or something else was wrong. I got turned away by many doctors with just some anti biotics. I am a hypochondriac with panic attack disorder, so sometimes I could be convinced it was all in my head. Until an ENT in north jersey finally suggested I get a CT scan just to be sure because he thought “it could be eagle neck syndrome”. Turns out he was right!!
Let me back up a little bit though. I had a couple bad concussions when I was around 15. Then by 16 I started waking up with a neck so stiff I had to be in bed a couple days (only like 1-2 times a year but it was intense). This may be connected, it may not be. I’m not sure but I thought I’d mention it.
The other thing I had noticed around that age though, was pain when I was at the dentist trying to open wide, and when I took a bite into a big sub from the deli. (I know it sounds silly). That hyperextension always caused very painful and long lasting cramps on the side of my neck where the calcification exists.
Back to now. My throat feels like it is closing most days and like it is very hard to swallow. I just began having headaches that start at the back of my neck and can go up the sides of my head near my ears and up to my temples and forehead too. I think my symptoms are rather mild after hearing how bad people have it here I am thinking of surgery soon though. The feeling of my throat tightening up with my panic disorder causes chaos in my head and can really create some bad times. Anyways, on a positive note I feel relieved to have been diagnosed. Because it is something that wont kill me, something that can be treated, and I finally know what it is.
I would love to hear from anyone on here even if youre just saying hello. Also if anyone has similar symptoms and want to talk about it please let me know!! I also wanted to see if anyone wanted to share CT scan photos. I just think it’d be interesting to compare. I will later on in this threat when I get the full feel of the site.
Right now I am living near downtown LA and looking for surgeons here. I know there are a few good ones at UCLA and other places here thanks to a long list I found on this site.
Anyways thank you everyone for creating this caring community, I look forward to chatting with you guys!!!
Hi! I def see a lot of similarities between your symptoms and mine so you’re not alone! Everyone’s symptoms vary a lot but yours sound very common for eagle syndrome from what I’ve read and experienced.
I had “migraines” for several years on one side of my head that were somewhat manageable and episodic, but in 2020 my symptoms got a lot worse after a routine dental cleaning. I ended up with throat pain behind my right tonsil (same side as headaches) and intense neck and shoulder pain. My tonsil on that side is also swollen and I tried a lot of antibiotics steroids etc, nothing helped.
I had surgery about three weeks ago to remove my styloid on that side and decompress my jugular vein. My surgeon found there was scar tissue on my omohyoid muscle (in the neck) and he believes it was from a whiplash injury. Likely from one of the a car accidents I was in throughout my life. So a head injury definitely could cause issues in that area. Your symptoms may be mild now but they will probably get worse or at least stay the same. I started getting the headaches on my right side when I was around 24 or 25 and they were not constant by age 30 my symptoms were unmanageable. Constant headache, neck pain and throat pain. I also had dizziness and lightheadedness and tinnitus when I was exercising or doing things like gardening. It was rough!
I hope you can meet with a surgeon soon to go over your options and get more info. Good luck!
Awesome thank you for sharing. My CTS are harder for me to read cause theyre just the black and white images but my doctor pointed it out to me.
Do you know how much the surgery typically costs?
I can get it free in NJ because my step mol is a nurse at a hospital there, but after reading some stories about people needing a few surgeries I think I’d rather spend some money and get it done right.
ALSO: if anyone sees this and has had throat tightness/ the feeling of something stuck in their throat let me know! I’d love to hear from anyone and compare stories
Sadly we don’t have any reliable ES doctors on our list for NJ. Dr. Hackman in NC has done bilateral surgery for an increasing number of our members over the last year & as far as we know, the surgeries have largely successful in helping relieve our members’ symptoms.
You can search for posts about doctors your considering by clicking on the magnifying glass icon above right & typing in a doctor’s name. Posts that mention that doctor will come up.
I never felt the bone in throat sensation but did have the throat closing one among many other symptoms. It isn’t pleasant. My earliest ES symptom was choking on food to the point I needed the Heimlich Maneuver done. It was awful. It wasn’t till a couple of years later that I started having neck pain & ultimately found a lump under my jaw that I later learned was my elongated left styloid. ES is one crazy bird, eh?!
I did. I felt like there was something stuck in my throat and my throat was closing or getting tight. I also had a chronic sore throat. Once I had my surgery, the throat closing feeling and the feeling that something was stuck in my throat are completely gone. The sore burning throat happens maybe once a week to every ten days now but not all day everyday like it did. My surgery was July 20, 2021.
It’s so good to hear about your progress, beachlady! It should continue over the next many months & hopefully the remaining symptoms will disappear completely.
I had that too. Was worse on the right side at the very beginning. I guess because the right styloid had a curvy tip at the end. Mine were about 5.5 cm and they were both touchable through my mouth in the tonsill area.
I am thinking of surgery soon though. The feeling of my throat tightening up with my panic disorder causes chaos in my head and can really create some bad times. Anyways, on a positive note I feel relieved to have been diagnosed. Because it is something that wont kill me, something that can be treated, and I finally know what it is.
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