Hello, I’m fairly new to this forum and I was curious if anyone has compiled a list of symptoms on Eagle syndrome that forum members may have experienced and mentioned on here. It seems I have many more symptoms than mentioned anywhere on the internet and I’m going to try to list them now. Fatigue,dizziness,confusion,short term memory loss, muscle weakness, vision problems, headaches, congestion ( even though my ENT said my sinuses are clear),ear pain,neck pain, thrush, feeling like I’m choking on something or stabbed in the esophegus, a lump in my neck/throat, weird random body pains, upper back numbness and itching, anxiety and depression that comes and goes almost daily and makes me feel like I’m going to lose my mind, limbs falling asleep and pain throughout my body. I don’t have anybody who understands what I’m going through so if anybody can relate to these symptoms at all please share. I have tried steroids which caused a lot of weight gain, OTC pain meds, CBD flower and gummies (hated both btw) they said I wouldn’t get ‘high’ but I did and also paranoid.Yuck! Drinking alcohol helped with the pain but also made me drunk so it’s a win/lose for me. I won’t take opioids which were the first thing prescribed to me and I still have a bit of a wait (Oct. 20, 2021) to speak with a surgeon regarding possible surgery. Thank you for any feed back, I feel like I’m losing this battle.
Hi @mutterfly,
I’m sorry for the struggles you’ve had trying to find things to help reduce your symptoms. If you click on the magnifying glass icon (above & to the right) & type symptoms in the search bar, a long list of links to discussions about people’s symptoms will come up. It may take you awhile to read through all the discussions but you’ll know you’re not alone once you’ve done that.
Your symptoms do sound like you may have vascular compression. We’ve had some members who’ve gotten relief from those types of symptoms by taking a blood thinner short term (these are often used as meds for high blood pressure). For your body pain, numbness, tingling (these would be nerve pains), you can try a nerve pain medication. These are usually either anti-convulsants or anti-depressants. Here is an article that discusses the two types & explains how each works to help reduce pain: Drugs that relieve nerve pain - Harvard Health.
Jules often mentions that using lidocaine patches &/or lidocaine cream on the neck has been helpful for some members. A more invasive approach is to find an ENT doctor who can give you an ultrasound guided injection of lidocaine & cortisone into your neck or tonsillar area. These shots can really help but some people have more pain after they get one so there is that downside.
You can try icing your neck - 15 min on & 45 min off. If that makes pain worsen, try heat instead. Sleep & rest w/ your head elevated a fair amount. You’ll need to get a wedge pillow to help reduce swelling post op so you could purchase that now, & test it out to see if it helps your vascular symptoms (headache, dizziness, confusion, memory loss, vision probs, headache, fatigue, etc).
As far as your less localized body aches & sleepy limbs go, they may or may not be related to ES. Our body systems are very integrated w/ each other so when one area is negatively affected, other areas farther away can suffer, too.
Depression/anxiety are controlled to some degree by the vagus nerve, & it’s one of the nerves more commonly irritated by ES. Also, chronic pain can cause depression & anxiety. It’s the result of never feeling good & fighting to make it through each day & of not being believed or understood when you try to share how you’re feeling w/ family & friends.
If you haven’t done so, call the doctor’s ofc & ask to be put on a cancellation list. People do cancel appts. last minute. You may be able to get in sooner that way.
Here are a few links from the “symptoms” search:
https://forum.livingwitheagle.org/t/es-information-background-anatomy-styloid-length-angulation-
classic-and-vascular/1391
Hello @Isaiah_40_31
Thank you for this information! I’ll be reading most, if not all of it, later today (when I get back home)and I really appreciate you taking the time to help myself and others who have ES. I am so grateful for this forum!
| Isaiah_40_31
July 30 |
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Hi @mutterfly,
I’m sorry for the struggles you’ve had trying to find things to help reduce your symptoms. If you click on the magnifying glass icon (above & to the right) & type symptoms in the search bar, a long list of links to discussions about people’s symptoms will come up. It may take you awhile to read through all the discussions but you’ll know you’re not alone once you’ve done that.
Your symptoms do sound like you may have vascular compression. We’ve had some members who’ve gotten relief from those types of symptoms by taking a blood thinner short term (these are often used as meds for high blood pressure). For your body pain, numbness, tingling (these would be nerve pains), you can try a nerve pain medication. These are usually either anti-convulsants or anti-depressants. Here is an article that discusses the two types & explains how each works to help reduce pain: Drugs that relieve nerve pain - Harvard Health.
Jules often mentions that using lidocaine patches &/or lidocaine cream on the neck has been helpful for some members. A more invasive approach is to find an ENT doctor who can give you an ultrasound guided injection of lidocaine & cortisone into your neck or tonsillar area. These shots can really help but some people have more pain after they get one so there is that downside.
You can try icing your neck - 15 min on & 45 min off. If that makes pain worsen, try heat instead. Sleep & rest w/ your head elevated a fair amount. You’ll need to get a wedge pillow to help reduce swelling post op so you could purchase that now, & test it out to see if it helps your vascular symptoms (headache, dizziness, confusion, memory loss, vision probs, headache, fatigue, etc).
As far as your less localized body aches & sleepy limbs go, they may or may not be related to ES. Our body systems are very integrated w/ each other so when one area is negatively affected, other areas farther away can suffer, too.
Depression/anxiety are controlled to some degree by the vagus nerve, & it’s one of the nerves more commonly irritated by ES. Also, chronic pain can cause depression & anxiety. It’s the result of never feeling good & fighting to make it through each day & of not being believed or understood when you try to share how you’re feeling w/ family & friends.
If you haven’t done so, call the doctor’s ofc & ask to be put on a cancellation list. People do cancel appts. last minute. You may be able to get in sooner that way.
Here are a few links from the “symptoms” search:
ES Information: Common Symptoms And Possible Explanations For Them Newbies Guide to Eagle Syndrome
ES Information: Common Symptoms And Possible Explanations For Their Causes: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used…
https://forum.livingwitheagle.org/t/es-information-background-anatomy-styloid-length-angulation-
classic-and-vascular/1391
One of our members did a survey a while back, the original discussion isn’t available but here’s a link with a PDF of the results:
Survey Results - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I have many of those same symptoms. I have had since April 4 th 2018 after waking up from a long surgery that had complications making it over 8 hours at an incline that they believe pushed everything over the edge for me. My styloid is both longer and thicker than what is considered acceptable. I see the surgeon on August 5th. I do have a question though. Have you flown with your symptoms? I am supposed to be flying from Minnesota to Morocco but honestly worried about being able to make it. I also have Chiari 1 malformation and really want to make the trip but scared at the same time. Big hugs. You have my prayers.
We have a number of members who’ve flown cross country & a few who’ve come from outside the US for surgery. The best options for making your trip tolerable are to upgrade your airplane seat if you can afford to do so. Business or first class will give you more leg room & more space to recline if you need to. If you’ve found ice helps your symptoms, bring some sandwich size Ziplock type bags with you & request ice from the flight attendants as you need it for your neck. The plane is pressurized but the pressure during ascending & descending does change, & you might find that stirs up your symptoms a bit. Some people have had no problem though. If you have jugular compression, try to keep your head in the position that helps your symptoms to be reduced as that will help w/ blood flow out of your brain & may reduce your brain fog & keep you from getting a headache.
Hopefully mutterfly will also give input if she’s flown w/ ES.
Hi @Melanie,
I have flown a couple of times with ES symptoms and haven’t had any difficulty other than ear pain during one flight. At the time, I had no clue I even had Eagle syndrome so I just chalked it up to a change in cabin pressure.Looking back, I am pretty sure having ES was a factor in the pain I experienced, which was fairly intense at the time. I bring gum to chew during my flights now and haven’t had any issues with it since, and the duration of my last flight was just over six hours. Not quite as long as your trip however, but I agree with Isaiah_40_31 about the cabin pressure changes with ascending and descending and think that’s probably when you might experience any discomfort, if at all. But I’m only going by my own personal experience of course. Perhaps your surgeon will have more information on your question and can hopefully ease your mind some. Thank you for your reply and big hugs and prayers for you as well! I wish you the best outcome w/your upcoming surgeon visit and also with your flight to Morocco, please let us know how it goes!
Thank you both so very much for your input on your experiences. I really appreciate you taking the time to answer.
I second mutterfly’s well wishes for your trip & doctor’s appt. Morocco sounds like a great adventure! I hope your trip is everything you want it to be & that your symptoms stay at rest while you’re there. 
Thank you so very much. I appreciate it.
I am newly diagnosed and have been going thru hell to even get confirmation of diagnosis. Have almost all of the same symptoms as you are describing. Had a cat scan of the neck 2 weeks ago showed nothing. Had an MRI with contrast 2 days ago waiting for results. Have never had so much trouble trying to get diagnosed and treated for anything before. I have had multiple cancer surgeries etc. Now covid is running rapid again. Good luck to you and me!
Have you been able to get an appointment w/ one of the doctors on our list who’s in your area, Cuddles1959? Seeing someone familiar w/ ES for a second opinion is always a good idea.
Interesting that you have a diagnosis from someone (your dentist?) but your CT didn’t show anything. If your CT was only of your neck, your styloids might not be visible depending on the angle the CT was taken. You really need a CT scan that covers the area between the skull base & hyoid bone which is angled to look specifically at the styloid processes & stylohyoid ligaments. You should check to see what was actually looked at.
Had a maxofacial MRI w contrast done on Monday. Hoping that shows more. I so appreciate the doctors list. The one nearest to me at advent health celebration no longer deals with eagles but another Dr in the head and neck area does.His name is Dr. Michael Siedman. He just wanted my primary care to get this test done before seeing him.
Thank you for a potential new name to add to our list. After you see Dr. Siedman, please let us know what you think. I’ll remove the doctor that is no longer dealing w/ ES from our list.
Unfortunately the MRIs don’t usually show up the styloids; CTs are best for that, although MRIs are useful for ruling anything else out. Were you able to get a copy of your CT images or a report?
No I haven’t gotten anything from my primary care Dr yet. He had ordered a 2nd CT scan after neck showed nothing and radiologist told him maxofacial MRI would be better so that’s what he went with. Ugh. But thanks for the info.
I’m sorry, I’m just seeing this now @Cuddles1959. I wish more doctors were aware of this condition. I suffered for years and was misdiagnosed and/or told I was fine over and over by various doctors, so I know how frustrating it can be. I hope you get some solid answers soon. Hugs! 
Thank you so much I really appreciate it. Are you doing well now I hope.
This is getting a little overwhelming for me. Seem to be getting worse daily. 1 step forward and 2 steps back. Ridiculous! I love the support I get here. Thank God for that!