Hi, I’m newly diagnosed with Eagle Syndrome. My symptoms consist of constant headaches, off balance, neck pain, ringing in the ears, vision problems. I saw the ENT, and he doesn’t feel it’s ES. I’m currently receiving physical therapy for the headaches, and on muscle relaxers, and Nuerontin. All these have helped the head pain, although still have daily headaches. My biggest issue is the off balance I’m experiencing. It’s beginning to affect my job. Primary doctor ordered a MRI of head today. Anyone have similar side effects?
I’m sorry you are going through this but there is hope. I had to stop teaching because of Es. I was at times so dizzy I couldn’t stand or walk, headaches migraines that sent me to emergency room. Lost cognitive function , was in a fog. Took 7 months to diagnose. I also was on all kinds of meds. Please don’t loose hope. This illness is so frustrating, however once you get the right Dr. and surgeon you will feel so much better. I’m 3 months out of surgery and feeling myself
Will pray
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Donihue, it sounds like you’ve gotten mixed messages as far as your diagnosis goes. All your symptoms fit nicely with an Eagle Syndrome diagnosis. There are many symptoms including heart & blood pressure issues which stem from elongated styloids or calcified stylohyoid ligaments pressing on the carotid arteries, jugular vein &/or vegas nerve. Though there are many symptoms common to ES, each individual seems to additionally have his/her own subset of symptoms that are “unexplainable” but which disappear after having the styloids/ligaments removed. There was a member on this site a year or more ago who had terrible vertigo as a result of ES. She had to quit her job. She tried using the Epley Maneuver to help relieve her vertigo. This didn’t help until after she had ES surgery, & the styloids were gone. She called herself Maui Miracle because her was profoundly decreased after her ES surgery although it did take several months post op for it to disappear completely.
I agree w/ Theeaglehaslanded - pursue finding a doctor who is familiar w/ ES & can help you. If you click on the HOME link at the top of this page, you will see a link that says “Doctor Information” click on that, & you will find a doctor list sorted by state. These are all doctors who have done ES surgery & have been referred by members on this site. There may be someone on there close enough to you for you to get help that way.
I, too, will pray for you to find the right help ASAP!
Agree with the others- if you look in the Newbies section there’s lots of ES Info sub-sections, and there’s one about common ES symptoms and possible causes for it. The area the styloids and stylo-hyoid ligaments are in is a very tight space, with all the major blood vessels going to and from the brain in, plus all the cranial nerves exit the base of skull in this area close to the SP’s, so it stands to reason that an elongated, extra-wide or funnily angled SP can compress or irritate any of these structures.
I had constant off-balance feeling, which made me nervous walking and driving- not always major head-spinning stuff, but just wobbly and like I was a bit drunk. I had compression of the jugular veins both sides, and the off-balance feeling went off straight away after surgery!
Best advice is not to give up, to keep pushing, try another doctor, print out info about symptoms which match yours (there’s links and info about research articles in the ES Info sections), and take with you to appointments. The MRI isn’t the best scan to show elongated styloids tec., but it will help to rule out anything else which might help you. A CT with contrast is the best scan to get to show any compression of blood vessels which might be causing your symptoms.
Good luck!
Hi @Donihue
Welcome. I too was recently diagnosed – feel free to read my Topic [which included 3D CT pics] -it is a bit long but I share the steps I have taken so far to get to the level of seeing Surgeons. I fought my way to that level in a little over 2 months. Hope it helps you. Fight for what you need and believe in yourself…if what you are told doesn’t ring true to you…keep pushing!
Seamom
Thank you very much.
I did have a CT scan which my ENT Dr. Said was very impressive as both ligaments are completly calcified, however he doesn’t believe my symptoms are ES as he states with ES your symptoms should be a stabbing pain in the back of the tongue ( which I don’t have). He thinks my facial pain is related to tight neck muscles, therefore I’m in physical therapy to loosen muscles, but the more I move my head around, the more the back of my neck hurts which is causing severe muscle tightening in my neck and shoulders. The MRI was to see if there were other causes for the off balance, drunk feeling. I will take your advice and look into Dr. In Michigan. I’m so thankful to have a support group such as this. It’s nice to know that you may not be crazy after all.
Thank you for your input AND prayers.
Doctors that haven’t had ES or who don’t have much ES experience can be quick to say that your pain pattern(s) don’t fit the “typical” ES pain patterns. Let me reiterate that there is nothing “typical” about ES symptoms. They vary by individual. DO NOT let any doctor be dismissive because your pain doesn’t fit into the expected pattern for ES. What hurts & how intense the pain is will be dependent on the angle at which your calcified ligament(s)/elongated styloid(s) are growing. Even length isn’t critical as far as pain goes because long styloids/calcified ligaments can cause no pain if they aren’t impinging on any nerves or vascular tissues. If you’re having pain in the presence of calcified s-h ligaments, then yours are interfering w/ nerves & potentially vascular tissues thus you have the multiple symptoms you experience. I hope my tirade makes sense. Doctors can be so frustrating because they want to stereotype based on what they’ve read or heard from other doctors. They need to learn that ES symptoms must be evaluated & understood on a case by case basis.
As Jules suggested, print out the info on this website relative to your symptoms & take it w/ you to your appointments. Also, keep a list of the symptoms you experience. Please keep us posted regarding what help you find.
Praying you will find help ASAP!
I had those EXACT symptoms for many years and Same thing— docs refuse to say its ES or dont know how to help. I stumbled across my own answer. Long story short my husband was a PT and i accidently found the answer in one of his books. A maasage/release of the DEEP portion of the sternocleidomastoid muscle. Not easy to get to but worth the effort. Immediately relieved my dizziness. As i recall the headaches took a little longer to fade. Best of luck
Thank you for your response and support. I’m hoping by the end of the month I can have more answers. And I also appreciate your prayers.
I am going to look this muscle up and see what it’s function is. Thank you for input. Definitely worth looking into.
hi Donihue
I too had the drunk-feeling, off balance, incessant dizziness, for years! My symptoms did not “fit” the classic ES but perfectly fit the “vascular ES”. I have had 1st surgery a month ago and already the worst off balance and dizziness has eased off dramatically.
This in mind, maybe show your specialist/dr some articles on the vascular type. I too have bilateral, completely ossified ligaments and elongated styloids.
best of luck
Thank you very much Della for your I put. So happy for you. Glad you were able to finally get much needed help and glad to hear you are doing much better.
Hi where did you get your surgery?
It seems everyone on here had surgery in America. Im in Ireland and theres only one surgeon listed who ill be seeing but hes an oral surgeon and i would prefer the external surgery. Even so he told me in a short disscussion by email that surgery is rarely nessesary even before he sees me. So i dont feel much hope.
Can you get to England [while still EU] to be seen? If so, I think there have been members seen there. [@Jules]
May you find the strength to fight for what you need and the luck to get the doctor on your side.
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Seamon i hope it doesnt come to that but i will if i have to. I would need referal from doctors here.
Has anyone just went to the ER at the hospital with ES and what did the hospital say? That your crazy?would it be a waste of time.
KCannady went to the ER w/ massive migraines caused by her ES. You might try sending her a message & asking what sort of response she got from them. If you click on the Member link at the top of the page & then type KCannady in the search box, a window pops up w/ a link so you can privately email her.