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Eagle Syndrome - Online Support Group

New To Group- Symptoms

So…I get a feeling of hope and some comfort from reading everyone’s comments and symptoms. But I don’t know if it is my elongated styloid process or not, because my symptoms are different I think.
My symptoms:
Talking a lot makes me feel off, and there is tightness under my jaw
throat feels raw sometimes
tingles or maybe its a tickle in my throat
ears feel full almost always
muscles hurt around neck
sometimes feel like I am grasping for air slightly
when my neck is real irritated my hands tingle to
get dry mouth really bad
will get heart palpitations, I think some times
or I will get like a hot flash
sometimes I feel like i got a lump in my throat, kinda
feels like someone is squeezing my neck below my jaw line some
I also get tight around my chest like a band and get stiff, sometimes

when I look down or up or left to right for long periods of time it hurts
dull pain too
I had in the past visual problems, sometimes not I will get spots
Its a lot of things and its hard to tell all of them, plus i don’t like complaining either so then I don’t say things.
I take Ibuprofen everyday, to try and ease it some which it doesn’t help but for my teeth pain.
I am going to my ENT on thursday, and I have my pano from my dentist.
My dentist seems to think its the TMJ (My teeth are very crooked but I havent had issues like this my entire life) and he thinks i am grinding and clenching my teeth all day, but I know I am not. But I went to a different dentist who pointed out my elongated styloid process, in the pano. My dentist said he saw that and is not convinced, and thinks I am a google warrior. I am only going to him still because of my crowns because I am having problems with them, because they are hitting my teeth too hard, and I did not have root canals. I know I have TMJ, and my teeth are crooked and all that, and now I am getting braces to prove my dentist wrong.
but this is not that kind of pain, I am pretty sure its my styloid process.
I also had a tonsillectomy at 24 or 25. It is hard to stay positive and all that when I have authoritarian people (Dentist) saying its porbably not that. And I am terrified my ENT will do the same. What Can I say and do to atleast convince the ENT to look and see if my elongated Styloid process is rubbing against nerves and muscles? (This is also a pano from January this year)

Hi peanut929!

All the symptoms you’ve listed go along with ES. The nerves that get irritated by elongated styloids &/or calcified stylohyoid ligaments are cranial nerves which affect many things in our bodies. I would say from your list of complaints that your facial & trigeminal (tooth pain, ear fullness), accessory (tingly fingers & neck tightness), & vagus (heart, throat, voice issues) nerves are for sure irritated & possibly some of the others. You may also have some vascular compression.

What you can tell your new ENT is that you are aware that a number of our cranial nerves exit the skull & exist in the neck in the area where the styloid processes & stylohyoid ligaments are. You can also say that when the stylohyoid ligaments calcify &/or the styloids elongate, they can cause irritation of those nerves which produces a wide variety of symptoms that don’t necessarily add up to any one diagnosis. Elongated styloids can also compress the internal carotid artery(ies) & the jugular vein causing additional problems (intracranial hypertension, migraines, fainting, & the like). You can tell him/her that you would like a diagnostic CT scan & request that it have some 3D images in addition to the CT slices. Caveat here - you do need to try to give this information w/o sounding like a know it all but it is important for the ENT to understand why you have such ranging symptoms, & what I’ve said above is the best way to explain it.

You should not give the ENT the whole list of your symptoms as many of them look for particular symptoms for ES (throat pain, feeling of something stuck in throat, ear pain, jaw pain) & dismiss the rest as being caused by something else. We know from experience here that the symptoms you’ve listed are related to ES & most will go away or at least decrease once the styloids &/or calcified s-h ligaments are removed so the nerves & vascular tissues can recover.

Please let us know if you have other questions.

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I have the same symptoms and i was diagnosed with ES from a nueromuscular dentist who works for ADA bioresearch. The clenching I had caused a lot of pain and broke my upper molar. I seriously went to 4 different dentist to figure what is wrong with me, until I met dr mike smith from the biting edge dentistry. He noticed my styloids calcified and referred me out but I went on this forum just like you and advocated for my own health. I’m pretty sure if you treat both TMD and get your styloids remove by a ENT who specializes in ES you will be okay. Best of luck I know you will get better :pray:t5:

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Thank you so much! I am going to say just that.(in my words and try not to say too much)
praying that my ENT will listen. Did you get your styloids out?

thank you so much for the info. My dentist is pushing for me to get braces so I prolly will, and I am going on my. 3rd set of crowns on the same two molars cause he (My dentist) has shaved them down so much he put pin holes in them. Because he can’t get them to not hit super hard. But I make sure I don’t clench all day, I have been very mindful.

Get your styloids out I haven’t got mine out yet but I clenched so hard that I broke my upper molar that had a crown and the dentist broke the one next to it. On top of that I thought it was my wisdom teeth and it was all unnecessary. I finally got a correct diagnosis from a dentist who is experienced in eagles syndrome and bite issues. He told me I don’t have cartilage in my TMD and also have styloids calcified. I’m getting one removed on October 23 and it’s been the best year of my life because I faced my fears of teeth and panic attacks. Do not get any extractions just pray and remove your styloids and get braces after if you have calcification. Start doing non stress things make yourself happy, then get braces to make your smile look good. One thing I should of done when I was younger but it’s never too late. My game plan is going to cost me but I have lawyer set up to help me from the damages of TMD. Your going to be okay trust me :pray:t5:

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Stay away from braces until both styloids are gone. My TMD is so much better. My bite is back as good as it can be. Those styloids actually can somehow affect your bite and how you chew and clenching. They are taking up space that you need for other tissue.They affect nerves and muscles and our muscles tighten. I am 6 months over the second removal. With Physical therapy we are still working on tiny jaw muscles and I am amazed at how much those styloids and calcified ligaments affected my bite and my life. You may not need those braces and if you do, anything you do now will be totally different once the styloids and stylohyoids, if necessary are gone. I might have avoided a cervical fusion if I had the eagles handled first. Not sure, but neck pain did not go away after the fusion and is better, now. Jaw pain, ear pain something stuck in the throat, headaches, facial nerve pain are common known symptoms to the medical community. Once you find the right doctor, they might ask you about the others, but each doctor has his own concept about eagles pain. The really good ones will be open to learning especially after surgery when you tell them the pains that are gone.
It is hard for doctors because Eagles was/is relatively rare. With internet forums and 3D imaging, information is getting published, but we are the cases that are being discussed at teaching hospitals and among the surgical community. It will take decades for the information to become general knowledge if ever.

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Hi peanut929 -

I had both of my styloids & both stylohyoid ligaments removed. My first surgery was in 11/14 & the second in 8/15. Having those nasty bones out of my neck has given me my life back. The surgery & time it took to recover from it were worth every second of post op discomfort for the overall improvement I’ve experienced.

I just looked at your pano x-ray. Your left styloid is quite angled & both look long. A CT scan will give you a much better idea of what those look like.

I agree w/ emma & Supersayianrulis, wait on the braces till you’ve had your styloidectomies. So much changes post op.

Please let us know how your appointment w/ the new ENT goes.

:sunflower:

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Can I second the info which has been given?! I would also add that not all ENTs believe in ES, so if possible I’d look at the Doctors List in the Doctors Info- it’s worth seeing someone familiar with ES, even if you have to travel, if this is possible. If not, take a copy of a research paper with you as well- there’s quite a few mentioned in the Newbies Guide info section, you should be able to find one which lists some of your symptoms.
Good luck, & let us know how you get on!

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Yes, ma’am I am seeing my ENT first who has performed my tonsillectomy and he removed my lymphnod from my neck, first but I have an appointment with one of the docs in the list on this site just in case. I am trying to stay in my city. I have been have a sharp shooting pain under my jaw bone this morning as we speak so sand I get them randomly on both sides and I just don’t think about adding it to my list lol. I am so glad I found this site. Thank you so much

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Okay, thank you so much for that. I made the appointment for braces because my dentist kept pushing me too. I am comfortable with my teeth the way they are, I love my crooked smile. I wrote more in Jules reply about my ENT. But I see him Tomorrow so maybe he will help me, if nothing else get me some CTs. Thank you so much for all the info and support you all are awesome

Thank you so much! Yea I have been dealing with these symptoms for a couple years now, when i first started getting them I freaked out and wound up being diagnosed with with generalized anxiety disorder, with which I have never had high amounts of anxiety and I would tell them my symptoms and they would say I am panicking and so i just learned to live with it. It’s been a journey, and calmness and like being on a whole other level has become a routine thing for me. This site is a god send though.
I def. am feeling more confident everyday that this is the issue with me.

@peanut929
Hey there! I completely understand the anxiety that comes with this. Not only are you dealing with the unknown, there is pain that can raise level of the anxiety. On top of that the elongated styloid can interfere with the vagus/parasympathetic nerves (among other things.) The irritated nerves can cause anxiety to race out of control. Here is an article I posted somewhere here that helps explains the vagus nerve:
https://www.thecut.com/2019/05/i-now-suspect-the-vagus-nerve-is-the-key-to-well-being.html The breathing technique really helped me.

Doctors like to tell us its all in our head and makes us feel like we are crazy. Its amazing how little the nerves are discussed by doctors.

All the best,
BG

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Update: went to ENT today, (not on the list) he is skeptical but, he said it could happened and he wants to rule it out so i am getting a CT scan with differential next week. He also palpated my throat where my tonsils were and it hurt like the dickens and he said he can feel my styloid process. He said in his 40 yrs he has had only 2 cases and they were obvious cases. So, he is going to do the CT and talk to his partner about it and look at it.

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HOORAY!!! That’s great news!! At least he didn’t send you away unheard & having dismissed your symptoms - a GIANT step in the right direction!

However, do not be disappointed if he isn’t satisfied that you have ES even after viewing your CT scan. Some doctors are very conservative with what they think is ES. If that’s the case here, it sounds like you have an appointment w/ a back-up doctor who will hopefully support you. :clap::clap:

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Yes! Thank you! I hope so too. He is very open minded about it, so we will see.

Great news that a CT can be done! Another hurdle jumped…

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Update!! So I went into speak with my ENT he said yes they are their he did not say I had Eagle’s syndrome just said I have elongated styloid process, but he wants me to see a neurologist. He said if you can fix it without surgery it would be if best interest basically. I have an appointment with the doc that’s on the list on here. I am gonna go and see what his opinion is. What do you all think?

The fact that you have elongated styloids, & have symptoms means that you do have ES, even if the doctor didn’t say the words! Seeing a Neuro can help you with pain relief, but isn’t a cure. Only have the styloids out will cure ES. So seeing a doctor with experience from the list is a good idea. Doctors who say that you can fix it without surgery, that surgery won’t help or it’s too risky don’t understand ES.

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Ok thank you for the affirmation. He also didn’t show me my CT with differential. I have it on a disk and will be taking it to one of the docs on the list on Tuesday and I will also be going to a neuroscientist Tuesday as well.

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