Hello, not sure where I’m going with this. I think I just need to vent and get some advice. I’ve had these symptoms for a long time and over the past few years they’re getting worse. I’ve seen orthodontists for what I thought was a TMJ issue and after 10000 dollars there was no improvement. I’ve been to chiropractors, massage therapists and even a NUCCA chiropractor who told me he’s suspicious of eagles syndrome (imaging shows elongated styloid process). My nurse practitioner is reluctant to send me to an ENT and sent me to an neurologist for migraines. I was very hopeful that the neurologist would hear me out about the eagle syndrome but he basically told me that there’s nothing you can do about eagles syndrome and it doesn’t cause any of the symptoms im having and that all the ENTs in my area won’t even look at a patient with eagles syndrome because theres nothing that can be done. I said well alot of people have surgery to remove them and he told me that I wouldnt even be a candidate for surgery because I’m fine and the only way i’d get surgery is if I were to have a stroke from it. He prescribed me antidepressants to help with headaches and pain. Im at a loss and don’t know where to go next. I feel like I’m crazy and it’s all in my head. Do I take the antidepressants? Im afraid that they’re just going to mask the real issues and when I want to go off them I’m going to be in worse shape than I am now. My symptoms are: daily headaches, dizziness, facial pain, throat pain (sometimes if feels like something is stuck and other times feels like im being strangled), neck pain, tongue pain, numbness and tingling in face and down my arms, head pressure ( i feel my heart beat in my head and face), I can’t scream anymore and throat pain worsens with lots of talking or singing. I also have severe throat pain when I cry. I get heart palpitations and shortness of breath (these were worse when the nucca chiropractor did treatments on upper neck), I have ear pain (stabbing pain when turning my head or yawning) all of these symptoms come and go but recently have been happening almost every evening. I’m in Canada but very tempted to try to get a video call consult with Dr. Ryan Osborne even just to get a diagnosis. Anyone else with the same symptoms?
Hi & welcome!
I’m really sorry that your doctor wasn’t at all helpful, unfortunately we see it so much with members, & especially with Canadian members!
Your symptoms are very common with ES; there’s ots of info about common symptoms & possible causes in this section:
And your doctor is definitely wrong about surgery… Have you had a CT scan or a panoramic x-ray for your TMJD? If you have you can always upload it here, we can have a quick look to see if you are on the right track… A consultation with Dr Osborne may well be useful, he’s been very helpful with diagnosing members as well as surgery, but I don’t know if he needs imaging sent before a consultation- hopefully other members who have seen him can let you know about that…I’m guessing if you haven’t had any it might be hard for you to get this?
Re the anti-depressants, depending on what he’s suggested & the dosage, it might be helpful, as anti-depressants can be used for nerve pain in lower doses- like Amitriptyline, Duloxetine… Yes, if they work they will only mask the nerve pain, & won’t ‘cure’ the ES, but if it helps you manage your symptoms while you push for a diagnosis & potentially surgery then that’s a good thing. Because they work in low doses, I would hope that coming off them wouldn’t be so difficult. Some can help you sleep too which is great as getting sleep when you’re in pain is not easy!
Some other tips which might be helpful are seeing if sleeping propped up a bit makes a difference, (it can help with head pressure), trying either heat or ice on your neck & throat, & I would avoid any more chiropractic treatments or massage if they don’t help, & unless they’re aware of ES, as these can sometimes make things worse, as you’ve found.
I’ve sent you an invite to a private thread for Canadians as it’s so difficult in your country & so you can connect with others.
Thank you for all the information! I have imaging that I can share here but it won’t let me upload them in this chat.
That’s because you’re new, I’ve changed it so you should be able to upload some now! Just make sure that you take off any personal info…
One thing that has helped me bypass doctors who try to write me off is to ask for very detailed notes.
If they give you a reason why you are not a candidate for something, request to have it documented and also ask to have documented that you do not agree.
In my experience, this puts a lot of pressure on some of them to either put effort into finding you the right doctor or not just downplaying your symptoms because if they are wrong, they are now much more liable for damages.
Not sure if it works this way in Canada, but this def has helped me in the US.
@Carecook - You have some significant stylohyoid ligament calcification separate from your styloids which is likely what’s causing your symptoms. Your right styloid is very short, but your left one is longer, thicker & pretty pointed. Though I’m not sure that it would be considered elongated, the other physical features which I mentioned could be causing it to also contribute to your symptoms. The angle of growth of both the styloids & stylohyoid ligaments can also significantly contribute to symptoms but I can’t tell about the angles yours are present in your neck.
Your styloids are circled in the image above.
I agree with @Isaiah_40_31 that there’s quite long calcification of your stylo-hyoid ligaments, so could well be causing the symptoms you’re having. I’m sure that Dr Osborne would agree!
@Carecook your intracranial hypertension symptoms are suggestive of IJV compression. I can help you assess whether your styloids are involved or not.
In your CT imaging, can you go to the axial view and go to C1? I’ve attached my own imaging to help you know what to look for. It’s the top vertebrae that has a white circle in the top middle and it has wings.
My imaging doesn’t show axial or C1 anywhere but I’ve tired to find my image that looks like yours. This is what I found..
@Carecook this seems to be the axial view for your head. I wonder if you scroll further through it will start showing your neck?
The one screenshot you posted numbered “1/119” very faintly shows C1. We need to go down a bit further. But it appears going up in numbers takes us further up your head, so the neck must be in another dataset, or it’s the latter half of this dataset (e.g., the neck might start at like 60/119 or something).
It must be a separate dataset. It’ll be the same view but itll be your neck
Now that I think about it, I think the CT scan was only of my head and not my neck, that’s why I can’t find it. Thank you for trying to help 
That makes sense!!!
You’ll want a CT with contrast of your head + neck if you can get one. CTA, CTV, or just CT with contrast. It’ll allow us to see the full lengths of the IJVs, ICAs, ECAs and their relationships to your styloids.
There is one slice where we can see some relevant anatomy. I’ve attached an annotated image. Can’t really assess any compression, but I’ve identified the beginning of your styloids and IJVs near the skull base. It appears your right IJV is your dominant IJV, given it’s larger size compared to your left IJV at this level.
Your symptoms sound very indicative of ijv compression. A lot of neurologists are extremely uneducated when it comes to this. When my surgeon first suspected eagles/stylojugular syndrome the neurologist was like no way you have that. Well that MRV showed 100% compression and 75-80% on another side…all I can say is the shock on her face when I told her
I’m glad you were finally diagnosed properly & were able to set your neurologist straight, @Benwt!
I’m sorry I’ve lost track. Have you had surgery yet? If so how are you doing?
Yes have been diagnosed! Right sided styloidectomy, C1 shave and ijv decompression scheduled for February, will likely never operate on left as that ijv appears to be hypoplastic. My surgeons aren’t 100% sure what kind out outcome I will get from surgery, as my symptoms are slightly abnormal but I have some minor signs of instability but there’s no real way to determine if that is the cause, ijv is the cause or it’s a bit of both so will be trying this first.
I’m glad you’ve got surgery scheduled even if it’s a bit in the future. I hope it helps you considerably, @Benwt! Please let us know how it goes for you.
@Benwt I’m in a similar boat as you. I have a left styloidectomy and left greater horn dissection coming soon. I do have what feels like some cervical instability, but in my opinion, I think it’s due to my muscle compensations from elongated styloids. I think once the styloids are removed and I can get full range of motion and deep neck flexor strength back, any cervical instability should get better if it is in fact present.
My surgeon also was transparent in that he said he couldn’t say for sure how much surgery will help. Presumably the greater horn dissection should reduce my stroke-like symptoms since it’s digging into my ICA and my styloidectomy should reduce my IJV compression symptoms. I’m not sure if doctors should provide percentage symptom reduction estimates or not. Every person responds differently to treatment.
Sounds very similar, I have multiple surgeons involved as my main surgeon presents all cases to a MDT group with neurosurgeons ent surgeons and interventions and all advised that it’s actually impossible to 100% diagnose stylojugular compression as 11% of the population have compressed ijv veins but not all are symptomatic surgery unfortunately is the diagnostic test.
We also are thinking the same as what you have said regarding muscles, I originally was given a cervical Dystonia diagnosis which to be honest never fully made sense, but once I saw my surgeon he said that in stylojugular syndrome your muscles can start guarding and with nerves involved too it’s easy for them to misfire. So the hope is potentially once I have my surgery the muscles will begin to stop overworking and any muscle guarding and imbalance may work itself out. We’ve agreed to review 3 months after surgery how my symptoms are and if I’m still getting upright neck pain are going to try prolo or prp. All of this is such a scary and costly thing though