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Eagle Syndrome - Online Support Group

First time posting - recently diagnosed with ES

Hi first time posting, 40 yo male with a unilateral elongated styloid I’ve been reading the postings and it has help tremendously.

I’ve been back and fourth on my symptoms and can’t really put my fingers on it.

So I thought I would post and ask a few questions here.

Sinus surgery last year in September 19
Endoscopic sinus surgery for Nasal polyps removal. This helped my sinus and I can breath but it didn’t alleviate the headaches and the pressure I’m feeling in my face.

Diagnosed with elongated styloid - eagles syndrome on January ‘2020 by my ENT , the ENT has not responded to my email about any of my questions and I’ve felt like he just left me high and dry.

Referred to neurologist for pain prevention - appointment is next week on the 22nd

Symptoms
Headaches - but feels like a big band is squeezing my head

Pressure in face like an infection

Tinnitus at times

Pain in my teeth - no cavities had it tested by dentist

Fatigue

Seems worst when I’m tired
Tyneol and Advil seems to work at times
Exercise helps my mental state

So always bad anxiety and always attributed the pain to the anxiety but I’m starting to think my anxiety is caused by the eagles syndrome and pain. Has anyone felt this way also ?

Are the symptoms a tall tale sign of eagles?

Do I need to find a doctor that specializes with eagle ?

How can we pin point if the issues is eagles syndrome?

What are some questions I should ask the doctor before and during my appointment?

I’ve read all the other symptoms that other people are having and I feel so bad and I’m sorry that we are all going through this.

Thank you to all of you on the forum for posting it feels like I’m not alone.

Hi ringpockets,

First, I’m sorry you’ve been diagnosed w/ ES but am glad you found us. You’ll get good information & advice here. I’m glad you posted your current questions.

The symptoms you mentioned can all be related to ES. The symptoms ES causes can come & go but often there are a few that tend to hang around. Your sinus surgery most likely did not cause ES, in case you’re wondering about that.

ES symptoms come from irritation of up to 6 out of 12 of our cranial nerves & can also be caused by the styloid(s) compressing the internal carotid artery &/or jugular vein. Your headaches & facial pressure could be coming from an irritated trigeminal nerve. It has 3 branches & can cause pain all over your face & can create migraine level headaches when it is unhappy. The other source of headaches can be vascular compression which can cause migraines, intracranial hypertension, vertigo, pulsatile tinnitus (though tinnitus can also be caused by the trigeminal & some other nerves), fainting, and the like. I am not a doctor but the way you describe your facial pain/pressure & coinciding headaches, it seems more likely that this is coming from your trigeminal nerve. Additionally, the vagus nerve is almost always affected by ES. It can cause a huge range of symptoms from pain at the back of your skull, to heavy duty anxiety (yes, ES can cause anxiety), heart palpitations, blood pressure issues, vocal loss, & gastrointestinal issues to name a few.

There is a series of videos about the cranial nerves on YouTube called Two Minute Neuroscience. These videos show the location of each of the nerves, discuss what each innervates & what symptoms are caused by each nerve’s dysfunction. The 6 nerves most often affected are the trigeminal, facial, glossopharyngeal, hypoglossal, accessory & vagus. There is also a lot of information available if you do a Google search on these nerves.

Going to the neurology appointment well informed about the potential nerves affected in your case may be helpful though you may also get “shut down” as some doctors hate patients who try to “self diagnose”. Additionally, if (s)he is willing to help you, anything offered short of surgery will be a “band-aid”. It may help for awhile, but ultimately, you’ll need to have the styloid removed to stop the nerve irritation & truly experience a “cure” for your symptoms. Questions you can ask would be 1) Are you familiar with Eagle Syndrome? 2) If so, do you do ES surgery or can you recommend someone who does? 3) If not, you can tell him/her that you know most of the symptoms come from cranial nerve irritation, then ask how the neurologist can help you manage the nerve pain/pressure until you’re able to find a surgeon to do surgery for you.
**If this doctor says surgery is risky/dangerous &/or won’t help you, please don’t let that deter you from considering surgery. ES surgery when done by a competent, knowledgeable surgeon is highly successful. In truth, ES surgery is major surgery, but when the symptoms get bad enough, most people are willing to take the risk and have surgery done.

I will attach our US Doctors List for you so you can check out doctors most local to you. You will need to find a skull based surgeon. These are most often ENT cancer specialists, neurosurgeons or maxillofacial surgeons. The majority of doctors on our list fall into the ENT category. We recommend external surgery (over intraoral) as nerves & vascular tissues can be better monitored during surgery & the styloid & stylohyoid ligament (if calcified) can be completely removed from skull base to hyoid bone. Some surgeons prefer to leave an inch of the styloid behind to protect nerves that are very close to the skull base. As that is normal styloid length, those surgeries are usually very successful.

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Hi,

I have a set of symptoms like yours, so I’d tend to make that link to the Eagle’s. Mine one side is about 6 cm and is close to the spine (the other 4cm but ‘more properly angled’).

Symptoms are similar: headaches with ‘band around face and forehead’; pressure between the jaw and the spine just under the earlobe; tinnitus (initially it was occasional and would disappear after lying for ten minutes on the opposite side than the elongation, now permanent); pain in the teeth, actually where the root is - even if that root canal was treated long time ago and there are no nerves anymore; fatigue - really bad, after sleeping 10-12 hours I can feel ok for about 4-5 hours until getting drowsy again: exercise helps (i suspect it increases blood pressure and circulation, and fatigue would be caused by the elongation limiting blood flow to the brain).

I have some more though, noticeably the head is tilted forward unilaterally and I can’t properly straighten my neck without feeling the styloid piercing all the soft tissue and literally touching the vertebraes. The shoulder of the affected side is also “locked” most of the times, and if it gets relaxed, any slight head turn/nod usually locks the shoulder and shoulderblade again.

So I would make the guess that your symptoms are eagle’s related.

Btw my anxiety is also increased, and that is noticeable especially just before falling asleep when the muscles lose all the tension. I’m subconsciously worried that the styloid may pinch my arteries/veins and cause the stroke, so often it makes me to jump up and change the posture to less comfortable but giving more space to the neck on the affected side.

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Thank you VDM!

Some days are better than other for me and I am really sorry that you are also going through this.

How are you managing your pain? What are the next steps for you?

Thank you in advance.

Thank you Isaiah_40_31!

I was able to watch the youtube video about the trigeminal Nerve. WOW! I am starting to understand the pain and where it is coming from. It helps to have a support fourm like this.
Thank you for the questions to ask. I have made an appointment with Dr. Garvis from Minnesota next week on the 5th.

Thank you again.

I also feel this fullness in my ear like I have to always pop them my ent has checked my ears and sinus. Is this also eagles syndrome?

It can be, mine were like being under water. It can be irritated nerves, but can also be down to vascular ES. I had bilateral jugular compression, so it caused pressure to build up in my head.

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Hi ringpockets,

Good job being proactive. If for some reason Dr. Garvis is not supportive, please let us know. Some of the doctors on our list are inconsistent in being willing to help patients w/ ES. Many of our members have had to travel out of state to get to an ES doctor who is willing to help them. Hopefully this will not be the case for you.

Right now I’m waiting for an ENT appointment. Lines here in Canada are long, like roads between major cities…

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Hi vdm,
Our members from Great Britain have the same issue w/ the wait. At least you’re in the queue. Is there such a thing as a cancellation list there? In the US, most medical offices keep a cancellation list for patients who want to see the doctor sooner than their scheduled appointment. If someone cancels an earlier appt, then the appt is offered to the top person on the cancellation list.

I hope whoever you see is helpful & that maybe your appt won’t be a terribly long wait.

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Quick update, I met with the neurologist today and she said that all my symptoms doesn’t seem like ES. Neurologist stated that I don’t have the pain in throat and swallowing difficulties. Would need to start on some sort of meds to relive head pain.

So in short the neurologist didn’t believe the ENT or myself and didn’t really care what I had to say only that my headaches were caused by tension.

Really sorry that they weren’t helpful…there is so much ignorance with doctors about ES! I never had pain swallowing or in throat! Other doctors have told members it can’t be ES because it doesn’t hurt to turn their head! Was your neurologist at all helpful with the nerve pain you have?
What’s your next step?

The lack of ES knowledge among the medical community is very frustrating. I’m sorry your appointment went as it did. It’s always disconcerting when a doctor is dismissive. They should at least pretend to be interested & supportive so you can leave your appointment feeling heard.

There are nerve meds that could help reduce or stop your headaches until you’re able to consider surgery. Use the magnifying glass icon above to search for the forum list that has the names of many of them.

ringpocket,
Hang in there and keep pushing forward. I flew to another state to see a specialist that understands and believes in ES and am scheduled for surgery in early April. I have alot of the same symptoms as you. The doc says the surgery may not help all my problems and not to expect it to. I do have TMJ and suspect some trigeminal nerve issues. To be honest, I really wont know until after my surgery and im recovered what will be left to deal with. I found a neurologist locally who specializes in injections re: botox, nerve blocks, etc. I suspect that is why your ENT referred you. Many docs will put you thru a standard procedure to address pain before going for surgery. Insurance may even require it. I went for a 2nd opinion this past week out of curiosity and the ENT agreed I had Eagles but that all my symptoms could be caused from acid reflux!! I told him I know that a nerve is compressed and he asked How do you know? I said I can feel it. I know my body! The guy was a young cocky doctor. Typical do not listen to patient doctor. He then tried to scare me away from surgery and told all the horror stories about intr-oral surgery (I had already gone to someone way more experienced than him and doing the external approach). I sat there and listened to his bs story. He mentioned about doing 40 surgeries - I think he only assisted. I mentioned that the other doc I saw had done over 450 of them. He then shut up.Thank god I went to an expert on ES before otherwise I would have been disheartened. Seek out someone to get expert opinion where you live or consider traveling to get it. Get a copy of the CT scan to take wherever you go or to mail for a consultation. I mailed mine first for review, then flew there for an in-person consult. Doc would have done a phone consult. The cost $300 although my insurance covered it. If you are in alot of pain, seek out a neurologist who specializes in pain management and injections until you can see someone who knows what they are dealing with. I hope that helps.

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Next steps: I was able to schedule with an ENT on the listed doctors here in Minnesota. Wait to see what he says.

Thanks all for the support and the responses. sorry for the late responses, I’ve been dealing with the flu and finally able to start feeling ok.

I’m sorry you’ve been sick, ringpockets. That certainly doesn’t help when you’re already dealing w/ ES. Stay well now & let us know what the ENT tells you. I hope (s)he is helpful & encouraging. :blush:

One thing I have learned through my search for answers to my health problems is that it makes a huge difference to network with other patients to find good doctors who know what to look for, what questions to ask, and what needs to be done, as there are many who don’t know.

It’s very frustrating when doctors (who have some authority) dismiss patients and don’t listen. Don’t be discouraged by them, everyone can’t know everything. Go to the next one who has a better chance of being helpful in the specific area you’re looking for.

An aside, I have met several neurologists, ENTs, and geneticists who told me many wrong things. I’m thinking of sending them all my current diagnosis and treatment plan so they all know they were wrong!

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That’s good, hopefully they’ll be more helpful! Let us know how you get on!

With my case the whole thing was crazy. My jaw locked up and I had pain pressure in my ear, eye and teeth. I thought I maybe had a tooth infection so I started with a dentist I had never seen before. He diagnosed me immediately and referred me to an ENT! Unfortunately, no one believed his diagnosis and it took me 3 months to actually get scheduled for surgery.
I am grateful for that dentist and grateful that my symptoms weren’t dismissed and even though it was a winding road…they finally reached the original diagnosis.
In reading the other messages here, 3 months is a super short time to wait.

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