Hello! I am new here- and not very tech savvy so I hope I’m doing this correctly to post. I recently got diagnosed with ES after years of suspecting it myself yet being brushed off by nearly every doctor, ENT and TMJ pain specialist. I kept getting the diagnosis: “TMJ with referred pain to the neck” even though I didn’t have horrible TMJ pain or anything, just neck pain throbbing and stabbing pain near my carotid just under my ear and mandible. Last year my symptoms suddenly got exceptionally bad after a neck massage with a lot of stretching side to side. I felt awful for months, went to all the neurologists pain specialists and my ENT who prescribed …physical therapy for my neck. I completed a few weeks of PT without significant relief but there was some… I ended up with a new symptom of pulsatile tinnitus and head pressure that I haven’t been able to figure out. I ended up in EXTREME 12 out of 10 worst pain of my life in February and despite protests from my family thinking I was being dramatic, I drove myself to the ER and got a contrast CT scan. ER doc said “looks fine! Go home”
Pain never fully subsided so I went to an Oral Surgeon who laughed in my face when I asked him if I had TMJ disorder. I asked him about ES and asked him to check my styloids and he told me “no! only truck drivers get that!”
finally went to a new TMJ orofacial pain specialist who suspected Eagle Syndrome- ordered a CT scan which the report said “mild ossification of stylohyoid ligament unlikely to be associated with Eagle Syndrome”… so like a dummy I returned to PT, more neck stretching, more deep tissue neck massage- And more pulsatile tinnitus and more pain with visual disturbances. I ended up at another ENT office with both scans and he diagnosed me with Eagles, AT LAST! but he said the surgery is not worth it, he’s done it, it doesn’t provide any relief and it’s too risky. He dismissed my pulsatile tinnitus as nothing to worry about.
I tried to manage this all with posture changes, the mildest pain medications and supplements like Alpha Lipoic Acid and magnesium glycinate
OBVIOUSLY it’s not working
I had a consultation with Dr Liou at Baylor in Houston yesterday and he also told me the surgery would be too risky and he’d have to remove my salivary glands and possibly abort the surgery without completing it- due to risks…
He told me that my pulsatile tinnitus is TMJ related and my occipital neck pain on the right side is also unrelated. I saw my 3D CT scan and my right styloid is 3.5 cm and very sharp and pointy! The left side, 3.2 cm but flat and curved in a different way. I feel minimal issues on left side.
Should I give up on seeking surgery? Will it get better with time…Did I cause myself any harm with the neck massage and physical therapy?
Do I need a CTA?
If anyone has pulsatile tinnitus, did it turn out to be anything serious or related to Eagles?
Clearly I am still anxious after my meeting with these doctors and appreciate any reassurance
Oh no, poor you, you’ve had such a rough time! It’s crazy how ignorant doctors are about ES! If you have copies of your imaging you can upload them on here (make sure you anonymise them first though)- there are tutorials on here to help with viewing images as well.
Firstly, doctors who say that the surgery doesn’t help, may well have not done a good enough job of it! If not enough of the styloid is removed, then symptoms don’t go away, it needs a skilled surgeon to remove them to the base of the skull, or as close as is safe to do. So if you’re able to see one of the doctors on our list who is experienced with surgery, then that would be helpful, I’ll attach it here: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
ES symptoms can ease up & then return, often with no apparent reason, but really surgery is the only cure. I would leave off the massage & PT for now, as they can worsen symptoms, & possibly do damage unless the practitioners are experienced with ES.
Pulsatile tinnitus is often ( but not always ) a symptom with compression of the Internal Jugular Veins. I had bilateral IJV compression, & had that tinnitus, it’s gone since surgery. So it could be that you have vascular ES - there’s info in the Newbies Guide Section about symptoms, here’s a link to that : ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
So if you could get a CT with contrast, it would be helpful to see if the IJVs are compressed- it would need to be timed to catch the venous phase, & cover from the base of the skull to the hyoid bone. I don’t know if you’re able to get this done?
There are quite a few doctors on the list in Texas, although if you do have vascular ES then if you could travel it might be better to see a doctor experienced with VES surgery (like Dr Nakaji in AZ, Dr Hepworth in CO or Dr Costantino in NY), although they’re obviously a way away for you!
But I would say don’t give up, keep pushing & fighting for yourself!
Hi @NachoEagle! I’m sorry that you’ve had such a difficult time finding doctors who are willing to look more deeply into what is causing your symptoms. I agree with Jules that it might be good for you to have a consultation with a doctor who is experienced in working with people who have Vascular Eagle Syndrome. Those doctors have the knowledge of looking at the scans and often being able to see pretty quickly if you have something going on that could be causing compression on the internal structures. Jules gave you some of the names of doctors that a lot of members have consulted with. I can also tell you that I experienced pulsatile tinnitus after some exercise sessions and then it wouldn’t go away. I started investigating it and eventually received the VES diagnosis. I think that when I was doing the exercises that I somehow shifted something that caused the elongated styloid and calcified ligament to compress my IJV more. I had headaches, neck pain, shoulder pain, and head pressure for a while before that. Also, after my surgery I noticed that my tinnitus was improved and even gone for a bit, but I have it again although it is quieter and still intermittent. I did notice that during my PT after surgery that my symptoms were worse when they wanted me to do chin tucks and neck rotations, which I then told them that I was not going to do anymore. I’m saying this because I absolutely think that you should be careful with physical therapy and neck massage until you know for sure what you are dealing with. I had bilateral Eagles, but have only had surgery on the left side. Because I still have compression on the right, I am careful with what I do as far as neck rotation goes, although I still am working on posture and strengthening. Also, just so you know, my primary doctor mentioned taking Alpha Lipoic Acid after the CT scans to possibly help with the radiation. The mag glycinate is also a good thing even if it doesn’t “fix” the tinnitus. Also, I’m not sure why the doctor said that the surgery is too risky unless you have some other health issues. Although every surgery is a risk, this surgery has been done for quite a while with generally decent to good results as long as you have an experienced surgeon. The first Neuro ENT that I saw said the same thing & that if I could live with the symptoms then I shouldn’t have the surgery bc it is such a nasty surgery. I am glad that I had the surgery and have had some improvements. I wish that it would’ve fixed everything, but I know that many people have said that they have had to get both sides done to get the best relief. Feel free to reach out to me if you have any questions. I hope that you find a doctor who will really look into what is happening.
So frustrating for you @NachoEagle! I totally understand why you might be questioning whether surgery really helps reduce ES symptoms or not. I completely agree with what @Jules & @vap have told you. I will “third” what they said about people having decent to good surgical outcomes when surgery is done by a very experienced ES surgeon.
With your symptoms potentially pointing to vascular compression, it is critical for you to find out whether or not that is present for the reasons @vap mentioned.
Dr. Chan-Leveno is one of the most experienced ES surgeons in your state though there are other good doctors there as well who are on our Doctors List. I hope you can get an appt with an experienced ES surgeon soon.
Thank you! I have asked all of my current doctors about vascular compression and I was told by ALL, including the ES surgeon this week, that it’s “impossible” or “improbable” and it’s nothing to lose sleep over. For a moment, I did feel relieved, however the signs and symptoms I am feeling override everything and I once again feel like I’m either crazy or not being told the truth.
It’s a tough place to be, mentally!
I will say, my PCP has been wonderful and so compassionate throughout this.
I will take your advice and seek out additional opinions by more experienced ES trained surgeons.
Thanks for the info and encouragement
I was diagnosed at a small local hospital, by a more junior doctor, the consultant confirmed it, but told me that the styloids couldn’t possibly compress blood vessels…luckily I found out about a more experienced doctor on here, & he did the CT with contrast which confirmed bilateral IJV compression! There’s so much ignorance about ES with doctors! The styloids are attached to the base of the skull, right beside a small opening (called the jugular foramen) where the IJVs, ICA & quite a few cranial nerves exit, so if the styloid is thick or angled it can compress these where they exit easily.
@NachoEagle - The surgeon who did my ES surgeries was also a “nay sayer” regarding the styloids being able to cause IJV compression in particular. I had symptoms of IJV compression that started just prior to my second ES surgery but I didn’t recognize them as such until 7 years after that surgery. I finally had my IJV decompressed in Oct. 2024. Unfortunately, the damage the compression caused (hearing loss in my case) can’t be undone, but at least some of the other symptoms are gone. It is VERY worthwhile pushing for the proper diagnosis.
If you haven’t had a CT scan w/ contrast, you should request that. Even better, a CTV to look at the condition of your jugulars. Those scans can be done dynamically by doctor request meaning w/ your head in different positions but especially in the position that causes your symptoms to worsen, if there is one.
Actually w/ ES, vascular symptoms can include those caused by compression of the internal carotid artery(ies) or by the internal jugular vein(s). Based on the discussions above, it does sound like you may have IJV compression so a CTV would show that best. A CTV is better for showing the veins as the contrast is injected during the venous phase of the heartbeat vs during the arterial phase for a CTA. Sometimes a CTA will show both the IJVs & ICAs but recently, we’ve been seeing that CTAs only show the carotid arteries. It would be good to get the order revised to a CTV.
