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Eagle Syndrome - Online Support Group

Symptom list

When I first introduced myself to this forum I did not go into much detail about my symptoms, but I think it’s important to list them (for others with similar issues and to work out for yourself what the heck is happening to your body). I feel like I’ve got so many symptoms going on and many started at about the same time…they must be related somehow. This is where I end up going around and around circles in my mind though trying to make sense of it all. Maybe in addition to ES I also have Hyoid Bone Syndrome or maybe it’s just being effected by the styloids shifting the ligaments or by the styloids causing the glands to swell and push on the hyoid…I’m really not sure. I’m hoping Dr. Samji can help me work through this during our upcoming appointment. I believe I have a mixture of classical and vascular ES symptoms. Both styloids are not quite 4 cm. I have a diagnosis of ES. I also have a very petite head and neck. I am female…in my mid-40s.

Specific symptoms (not in any particular order, sorry for the length):

Styloid process felt in both tonsils (left closer to surface than right). Both are tender and cause local moderate pain upon pressure. There are other referred effects (e.g. pain in collar bone, dizziness/weakness), and these can be delayed by a few seconds. Pressure does not cause ear or facial pain.

Feeling that something is stuck in throat below base of tongue on the anterior/front side…I guess it would be the larynx. ENTs have looked many times and see nothing. I also have the greater cornu of my hyoid bone actually pressing into my esophagus on the left side. This is uncomfortable and I suspect that when I swallow it is hitting the back wall of my throat. If I swallow when turning my head at the same time this (or something else in this area) can cause sharp, attention-getting pain. There is also pain in the tissue beside the hyoid on the left side. Not sure if this is from the hyoid or from the stylo-hyoid ligament. Hyoid bone seems to shift side to side. I understand it is normal for it to rock back and forth but it shouldn’t make you feel ill. Yes, I stuck my finger down my throat that far…I was desperate to find the source of the pain. Painful to swallow in this area.

Sore throats often (once a week for several days each time). Redness, cobblestoning on back wall. Permanent (for past 6 months) darker streaks of irritated tissue on surface peeking out from behind tonsils. Left tonsil bulging.

Ear pain and popping and constant ringing, behind ear sharp pain. Whooshing noise with heartbeat/pulsitile tinnitis (esp when turn to right and lay on front, pressure on left side neck).

Burning mouth, tongue, gums…this is sporadic

Crampy feeling under tongue and jaw

Upper lip and side of face sometimes feel strange, numb, painful

Occasional under eye and cheekbone pain

Occasional (several times a day) stinging pain in nostrils

High ocular pressure, blurriness, eye redness and pain. I did not realize this was related to the problems in my neck until recently. It is either aggravated by or caused by nerve stimulation. But there is also a vascular component and the beta blocker eye drops help significantly.

Headache (nerve pain shoots up to top of head (parietal region?). I’ve had five 24-48 hour long severe headaches preventing me from getting out of bed (about one per week). Pain is not always in the same place and can move around. This movement of pain argues against a true migraine, but it is terrible, nonetheless.

Head pressure (top and front of head) from the inside out. When this happens and it is quiet in the room I can actually hear my brain or fluid around the brain tissue popping like Rice Krispies. This is scary but the emergency room has referred me to a headache neurologist to discuss Pseudotumor Cerebrei and ocular hypertension…they did not do a spinal fluid release or put in a shunt.

Dizziness/weakness/lightheadedness (pass out feeling)/sick nausea, spells lasting couple hours…must lie down most of the day. I believe some of this is nerve stimulation and some is fluctuating blood pressure. Mine ranges from 100/60 (normal for me all my life) to 145/90 lately. It can actually easily be both in the same day. I was prescribed Metoprolol last week for almost constant palpitations and to prevent these swings. The palpitations/PVCs persist but the blood pressure is somewhat better and so have more energy. Most people on beta blockers report less energy so this is confusing.

Chest pain (some related to PVCs, some not)

Shoulder and arm pain (occasional)

Collar bone and whole neck pain (sides and back of neck also) popping, stiffness

Neck Pain on turning head (mostly behind submandibular glands). Not sure if this is the styloid or the hyoid bone causing this…or both.

Front (top and bottom) tooth pain when biting down

Hard time chewing…jaw fatigue, pain in corners of jaw

Overall malaise

Strange breath, taste in mouth sometimes

Clear fluid coming from left nostril frequently. No sinus infections.

Intense burning pain in neck that increases with exercise level…they had me do a stress test and so though my neck in front was going to catch fire

Car sickness without vomiting. Dizziness, head pressure, feeling like huge weight sitting on me, neck pressure, more palpitations in the car and this is worst at higher speeds. Most symptoms aggravated. Even if not driving. Not sure how I will travel for surgery…anyone have luck with Dramamine?

Looking downward (even slightly) for extended periods causes dizziness/strangled feeling, near-syncope episode once last week…scared me.

I do not have any brain fog somehow. As a matter of fact, I would say that my cognitive function has improved.

Please let me know if it sounds like other things are going on or if all could fit under the ES category.

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I forgot to add voice changes. My voice cuts out and I get tired of talking quickly.

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Hi redbird773 ~

That’s quite a list of symptoms. I’m sorry you’ve got such a variety! I can imagine each day is a new struggle for you. Here’s hoping & praying that surgery makes a world of difference for you.

From my experience & reading about others’ experiences on this forum, your symptoms could all be related to ES & your shifting hyoid bone. I will say this, when you talk to Dr. Samji, stick with the more common symptoms. He will potentially be dismissive of ES causing anything other than the throat, jaw, & tongue problems & a few vascular symptoms. He does not believe in “vascular ES” as a separate entity from ES. It all falls under the same umbrella in his book. If you get too crazy listing symptoms, there is the possibility he’ll say he can’t help you. This has happened to some people in the past. His experience is in doing surgery for ES not in comprehending the broad spectrum of its symptoms.

I’m glad you don’t have brain fog. That’s definitely something to be thankful for!

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I think that most of those have been experienced/ mentioned by members on here; if you look in the Newbies Guide section there’s the results of a survey done a while back so you can see the weird & wacky variety that members have had! There’s also a good explanation of what nerves can be affected & the symptoms that could cause which is interesting.
It’s helpful for new members to read discussions like this so they feel not so alone…

Hi!! I am so sorry you are going through this too. I had most of those symptoms except the voice one and nose running. But i had car sickness and everything too. It sounds like u also have TMJ which causes eagle syndrome. Make sure to treat both of those issues seperatley. I had vascular eagles too. I just want to let u know there is hope and dr samji from what i heard is the best ES surgeon around. He was too far for me so i went to Dr cognetti. I had both sides removed. All of my symptoms that u listed are gone except…there was some damage to left side jugular vein which open somewhat after surgery but not fully so still hear heartbeat in ear but much quieter and less often. I also have bad stomach issues from ES which have been up and down since surgery. It seemed like it started to get better after surgery but then got bad again. But most other symptoms disappeared in the months after surgery but be patient it can take months for them to start dissapearing. I just had mine done a few months back. I highly recommend u get them out asap to prevent further damage in there and u will feel much better. The traveling there for first one will be horrible. After the first one is out the traveling for the second one will be cake bc u will already feel so so much better!! The first one the car ride there i kept saying im not going to make it. I thought i would die before i got there. My husband kept driving and somehow we made it. Now i am pregnant with my first and very thankful so im not sure if pregnancy made stomach issues or some eagles symptoms come back because of puking and strain on my neck. I was so excited i felt better we rushed into trying to have kids. So hopefully after our little one is here i can go back to healing. Best of luck! Stay strong! One day at a time! :two_hearts::pray:t2:

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Cupcake 5
Thank you for your encouraging post & for your list of symptoms. As Jules said, it’s good for others to see what each of us has experienced as it helps us all to feel less isolated & crazy!

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Woohoo, congratulations to you! :family_man_woman_boy::gift:

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Some days are definitely better than others. Wish so could understand what makes it better…perhaps just rest, but that’s not always feasible.

I had hoped to explain most of my symptoms to the surgeon mainly to make sure he understood where my pain and discomfort was, but also to reduce my odds of needing additional surgeries. If he thinks that other things should be removed…or nothing should be removed…then I don’t want to sway him in any particular direction. I tend to agree about not binning the type of ES, especially since there are two elongated styloids and only one is compressing the jugular. Both are touching the ICAs but I have no idea what effect that is actually having on a scale of 0-10 compared to the nerve stimulation. I guess that’s why they say you have to take it out and see what happens:)

Jules, I’ve read it several times and am so glad that it is there:) Thank you so much!

Awesome list. Visualize yourself on here one day when this is behind you and you are reporting to us what all has ceased! I have stood over many a gas station garbage can on an interstate exit, with no vomiting. Maybe that will go away for me and you both!

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Cupcake5, thank you so much for your kind words. I’m definitely trying to get them out ASAP. It’s taken me too long to find a surgeon I could feel comfortable with and get the right scans sent and the radiologist to measure the styloids and write the addendum…on and on. It’s just a slow process and no one is in as big of a hurry as you are yourself. Lol. It’s so good to know that we have had so many similar issues and yours were mostly taken care of with surgery. Did Cognetti take the entire length back to the skull base for you? Mine is really imbedded into my right jugular and I’m wondering if my surgeon will be able to cut it all the way back.

Congratulations on the pregnancy! That is wonderful:) I’m sorry that your stomach has given you so much grief. Hopefully your morning sickness will pass soon.

SewMomma, it’s just so weird because I’ve never felt bad riding in the car until about 6 months ago. Crazy nerves. Is yours not any better since your surgery? Do you have one of your styloids left still…or maybe the nerves are just still in recovery?

I’ve driven to Target once and church three times since surgery, all within 10 miles, lol! We are planning a 4 hour trip to see family in May. I’ll certainly let you know how that drive goes! I had 3 cm of ligament removed. My styloids look like little nubs so we left them alone. So are you flying to California?

Best of luck to you in your recovery…I’ll certainly keep you in my prayers for permanent relief from the awful car sickness junk. I will be making a one hour drive to the airport, then flying to CA (unless he decides he doesn’t want to do the surgeries).

And prayers back at ya that Dr. Samji scoops you right up!

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Thank you, SewMomma☺️

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You need to go with your gut as far as your conversation with dr Samji goes. I may have been a little too restrictive in my comment. I do know that he doesn’t respond well to people who come to him w/ a long list of symptoms & articulate expectation that the ES surgery he does will cure them all.

Get them out then celebrate the things that went away with us on here!