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Eagle Syndrome - Online Support Group

New to site

I’m new to the site. I was told 12 years ago that I had eagle syndrome but the doctor was very nonchalant about it, as it was an incidental finding. After a car accident in 2014 I started having many different symptoms and went to different types of doctors and Was worked up for whatever they thought it was and left without any answers. Finally I went to an ENT and after 5 more years was worked up for eagle syndrome. I had my panoramic xray and CT. I was referred to Dr. Cognetti but have some questions regarding my results. I have no idea what a normal styloid process length is and what the positioning of it means. The styloid is palpable in my right tonsilar fossa. I don’t want to waste Dr. Cognetti’s time, as I know he is very busy. Can someone please help guide me as to if I should even consult with Dr. Cognetti. I appreciate your time

Hi Hayleyjofa!

Welcome to our awesome forum! Many of the ES symptoms are caused by irritation of up to 6 different cranial nerves that “live” in the neck area where the styloids are. These nerves are the Trigeminal, Facial, Glossopharyngeal, Hypoglossal, Accesory & Vagus nerves. You can learn about them by watching the “Two Minute Neuroscience” video for each one on YouTube. Doing this will help you identify the source of at least some of your symptoms.

Normal styloid length is abt 2.54 cm or 1 inch. Anything longer than that can be considered elongated though most doctors consider 3+ cm to be elongated. It’s not just the length of the styloid that factors into ES symptoms but also how thick they are, How pointed, angled &/or twisted. All these factors count. In addition, the stylohyoid ligament (runs from styloid tips to lesser horns of the hyoid bone) can also be calcified or partially calcified which can add to the symptoms.

In order to get relief from ES symptoms styloid/s-h ligament removal is generally necessary to allow the nerves to recover.

If you’ve been referred to Dr. Cognetti, you’re in good hands as he’s one of the most experienced ES surgeons on our list. He will be able to help you. From our great experience base here, we’re happy to answer your questions, but we are not doctors.

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Hi, & welcome to the site!
As well as the info Isaiah gave you, there’s lots more info in the Newbies Guide Section; things like common symptoms & what might cause them, & about surgery. And the past discussions are really helpful too- if you search for what to expect after surgery, it’ll give you an idea of what to expect.
We do suggest questions to ask the doctors to judge their experience, but Dr Cognetti is operated on many members here, so that’s not a problem. The only thing I’d say is that if you’re able to find out whether you have elongated styloid processes and/ or calcification of the stylo-hyoid ligaments (one or both of those things can cause ES), as we’re not sure that Dr Cognetti removes calcified ligaments.
There are some risks to surgery, so it shouldn’t be undertaken lightly, but if your symptoms are very debilitating & affect your quality of life alot then surgery is the only cure.
Hope this helps; if there’s anything specific you want to know feel free to ask!

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Welcome! I was diagnosed and had surgery to remove my left styloid within the last 4 months. This site helped me tremendously! If I were you I would definitely listen to the advice given here. It will help ease any anxiety you have and provide great information as your proceed forward. Good luck to you!

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Welcome! You have come to the right place here. This site above all will bring you comfort in knowing you are not alone in this journey. Hugs to you and best wishes.

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Thanks! My right styloid is thicker and elongated and extends inferomedially in neck for 3.2cm. Unfortunately that is all they mention. I am going to send Dr Cognetti all of my imaging and office notes and go from there. I have learned a lot reading past posts and thank u all for the information! I will definitely continue to read more posts. This site is so awesome!

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So glad you’re finding answers here, Hayleyjofa. Sounds like your styloid has a good angle going which will impact nerves in the area & that’s what causes your symptoms. A thick styloid can be problematic even w/o elongation as some of the cranial nerves I mentioned exit the skull right near where the styloid is attached thus a thick styloid will crowd them in that area & cause them to become irritated.

Welcome Hayleyjofa! What you are describing in terms of symptoms and also imaging results definitely sounds like it is reasonable to be discussing ES. I wish you a quick and effective treatment with Dr. Cognetti.

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I am new to this sight also and appreciate all I am learning! I was diagnosed with ES by an ENT after an Ultrasound and an X-ray, but don’t know the measurements, just that he said it is huge and he has been concerned about it cutting off blood flow to the brain. Kinda scarry! I have a mass on top of the bone on the right side and have asked to have it biopsied, but he just watches it, but my tongue and back of my throat are always swollen, and it feels yucky. I do get horrible neck and jaw and face pain and really bad migraines. Don’t know what symptoms to watch for or where to go from here, as my ENT doesn’t want to do anything but keep an eye on me. When do you know you need to get more help?

Personally, I’d get a second opinion on this; Dr Cognetti in PA is experienced with ES, so I’d see if you can get a referral to him. I’m UK, so we have a diferent referral system, we have to be referred by a GP/ PCP. Others have had phone consults & sent their scan pics & reports to him, I’d suggest ringing his office to ask, the details are in the Doctors List in the Doctors Info Section. Good luck!

Thanks! Appreciate the input! This can all be overwhelming!

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I suggest the same. Sometimes wait and see gets to a point where it is intolerable. Get to someone who will take action! Many of us have had the neck, jaw and face pain along with migraines and it is the worst! You may want to seek out a neurologist who specializes in injections in the neck and jaw if yo are in alot of pain until they get this figured out. I got botox for the migraines and steriod and nerve block injections that really helped me until I got surgery.

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Thank you so much Snapple 2020 for these suggestions! When the pain hits which is quite often, it is all encompasing, entire neck, jaw, ears, face and head From lower skull to entire head. My ENT suggested motrin which does absolutely nothing! Appreciate your suggestions and this group so much! :slightly_smiling_face:

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Motrin? Well I have an old stash of oxycotin from previous surgeries and it barely even takes the edge off. The worst pain flair I had in Dec, I drove 45 minutes to get injections the day before xmas with ice packs on the side of my neck and head. It was so bad, my eyes and sinus running and doc said I was having a reaction to the intense pain. I had about 4 hours of relief from the nerve block and it took a couple weeks for the steroids to kick in and clam the area down. I spent xmas day in bed all day with ice packs on. When it gets to the point, you just want to get knocked out or in my case feeling like just cut my head off to make the pain go away, its bad. One of my surgeons said I have a very high tolerance to pain. I think many of us do because of the chronic pain that develops with this. When I go in and complain, that usually means its unbearable. Im not much of a whiner and when im in extreme pain, I tend to roll up in a ball and get very quiet. Maybe these docs just dont believe the level of pain you are in unless you are crying hysterically and wreathing on the ground? So many docs so concerned about giving RX for opioids which does not help when you are in extreme pain. When the head pain flairs like this, it is not the time to withhold opioids. When I first had a flair in 2015, I went to an ENT that did an MRI and couldnt find anything. she was useless. I then went to a neck and spine surgeon. He didnt figure out what the problem was but did recognize it was an inflammatory event. He did give me an RX for dexamethazone, a strong oral steroid with loading doses that knocked it down to tolerable within 24 hours. Interestingly they have found this drug to be effective with bad cases of COVID. If you have a good PCP, maybe you could go and beg for stronger meds, maybe muscle relaxers to go along with the opioids and an anti-inflammatory? It may take weeks or months to get into see a doc that does injections.

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Wow Snapple 2020 you have been through it! It is so nice to be able to talk to someone who knows what I am experiencing and how I feel… that believes this is real and I am not making up this pain! Yep, just wanna die sometimes the pain is so bad! Try and make my mind go somewhere else or pray for others I know who are suffering… hard to do when you are in that much pain. Thank you for sharing. I appreciate your knowledge and input, this is all so helpful to me!

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Praying for you back, Daisy! :pray:t2: :hugs:

Thank you Jules!

Hi Daisy,

So sorry you’re having such intense pain. I’ll pray for you, too. :hugs:

Thank you! The intensity is not constant, but when it it hits it is bad! I am sure everyone else experiences the same thing.

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