So I’ve had this problem for approximately 5 months now. From the start my symptoms have been this pressure which I feel under my jaw on each side as well as pressure just behind each ear and the back of my neck. Some days I barely notice it however it’s always there. If I find the right place to push on my neck it tender however the pain is deep but for the most part not a sharp pain. Most days I wake up feeling much better. Little to no symptoms but yet I know it’s there. As the day progresses the pressure becomes more. I’m able to put to where the pressure is coming from quite easily when pushing up from under the jaw however the back of the neck it seems to be an larger area that is a bit tender. However I keep telling my doctor when I push on the right area in the back of my neck I feel it where I’m describing under my jaw. It’s almost like i can take one hand behind my ear and the other up under my jaw and push toward the same spot where it’s tender. I did have a CT which the report says they found nothing. When the pressure becomes worse it starts to feel a bit like a lump in my throat and eventually becomes more of an ache. About this time I start to get ear pressure and what feels like sinus pressure however my nose seems as clear as can be. Also my ears sometimes ring.
A lot of times this pressure allows me feel my pulse in my face or neck. Initially I thought my problem was with my heart as I have a large amount of premature beats and if anyone has had them they can be quite disturbing even though they are considered benign and harmless for the most part. So i saw a cardiologist and found out somewhere around 10% of my beats are premature. He offered me an ablation to fix it and assured me it was benign however I’ve yet to decide as I really just want to figure out the neck thing. I knew I had had this premature beats before but now I notice them much much more often.
The pressure I started feeling started not too long after i was in a very minor car accident where we ran off the road and hit a bump which caused my head to go to the side and hit my shoulder. I was fine after the accident however I believe these specific symptoms started not too long after that. I have had the lump in the throat feeling for awhile before this however my doctor told me it was anxiety induced before. The pain/pressure I’m feeling now definitely is not.
Starting yesterday I’ve had a much more sharp pain in my left ear that radiates to my nostril. This is the first sharp pain I’ve really had except when it gets bad and I push up under my jaw I can get a pretty decent amount of pain. It always seems to be both sides but generally worse on the left.
My PCP believes it’s TMJ which is possible as I know I grind my teeth very badly at night. However my pain is much better in the morning and doesn’t change when i clinch my jaw. I don’t really have any problems swallowing, just a lump in the throat feeling. The pain/pressure changes a bit when moving my head but not enough to keep me from doing it and definitely not any sort of sharp pain.
No clue if this is Eagles but I know I saw some people said I could send my images into some of the doctors who know about this and they would review them? Just want to put this on here and see what people think. I asked for my CT a few weeks ago and looking up differential diagnoses to TMJ I found Eagles and sure enough it seemed like my styloids were elongated but since that’s not entirely uncommon it seems maybe it has nothing to do with my symptoms. Also my hyoid looks quite crooked to me but I’m not sure what that would be. I can only add one picture as a new member so hopefully i can add more later if you guys need. I made this 3D CT using the instructions on this site
Your symptoms sound similar to a lot of people’s symptoms- there’s info in the Newbies Guide about common symptoms, and the results of a survey a member did a while back. The pressure feeling, lump in the throat feeling etc are all common, as are tinnitus and pulsatile tinnitus (when you can hear your heartbeat like a whooshing sound). Not sure if you’re hearing yours or feeling a pulsing? I had that, and it was the styloids compressing the jugular vein- it’s better after surgery.
There does seem to be a lot of members who have TMJD, and also quite a few members have had problems with their neck following car accidents- neck trauma is one of the causes of ES.
We’re not doctors, nor experts on here, but it does look like your styloid processes are quite long- you can see that they go down past the first couple of vertebrae. It’s not always the length which can cause symptoms, but the angle too, which can’t be seen from your pics. Again, no expertise here, but some members have found that they have had heart problems caused by pressure on the vagus nerve. I don’t know if that’s maybe anything to do with your heart arrhythmia? That might be something to run by the cardiologist if you see them again before having an ablation?
Some doctors will look at the CTs, so it’s worth ringing their office to see. If it’s any help, here’s a link to a previous discussion we had about Dr Samji’s referral process:
Well unfortunately I don’t have the non-contrast CT with styloid protocol. I’m actually in northern Indiana so would be nice to at least find doctor who knows something about this in my area so I can get the right tests done. I’ve looked at the list but it’s still tough to find someone close. I’ve been to an ENT near here twice and he only wants to send me to physical therapy.
Was wondering if anyone has had the same cycle of it being better in the mornings and getting worse as the day progresses. I think that makes the doctors think it’s stress induced but this happens even on days when I don’t have work. I can’t find what is actually triggering it it just seems to be better in the morning.
I think you’re right in that if it were hitting my vagus nerve, specifically on the left side, it could be causing my premature beats. I would like to get this figured out before I ever decide on the ablation. It would be pretty sad if i were to go through all that only to find out this problem was causing it all along. My premature beats rarely bothered me until now. But i didn’t have a holter monitor until after this started so it’s possible they have become much more frequent.
And if it is from this it would make sense that it could be getting worse over time.
I’ll add the pictures i have right now but i can’t get more until late tonight or tomorrow if you want a different angle or something. I tried to measure them myself but it’s hard to get it exact and I didn’t have a mouse for my computer last night and it was hard to do with the track pad. I was getting numbers between 38 and 42 mm. Just noticed the first picture doesn’t show my hyoid so you’ll want to look at that cause it looks quite odd to me.
I must reiterate what Jules said about us not being doctors, so we can’t officially give you a diagnosis based on the appearance of your CT scans, but I agree w/ her that your styloids look very long. I suspect your stylohyoid ligaments are also at least partially calcified. I would also be very suspicious that the symptoms you’re having are related to the elongated styloids, as they are (again as Jules said) very common ES symptoms. It isn’t unusual for ES pain to vary throughout the day. It’s possible yours is worse in the afternoon because your head is pretty stationary & neck relaxed during the night, but once you’re up & on the move, you turn your head from side to side in response to various stimuli in your daily activities. Even if these movements are small, they could still be causing your styloids to rub on muscles & nerves thus creating irritation that gets worse over the course of the day. I had a terrible problem during exercise before my styloids were removed. I’d get blood pressure drops, heart palpitations, breathlessness that I couldn’t recover from in a timely fashion, light-headedness, etc. These were symptoms I didn’t have if I wasn’t exercising. I do agree that your heart issues could be related to the elongated styloids.
Sadly, there are many ENT doctors who’ve never heard of ES so even though that’s the doctor of choice to see for diagnosis, you need to find one who’s “in the know”. The most practiced ES doctor near you is in Pennsylvania - Dr. Cognetti. You can find his info in the ES Doctors List found when you click on the “HOME” tab above. I’m not sure why some doctors prefer CTs w/ contrast & others don’t.
Be aggressive in searching out someone who knows about ES & have them look at your scans. Having my styloids & s-h ligaments removed gave me back my life.
Unfortunately the doctor in Muncie is out of network for my insurance. I’ll have to either pay for that or look into doctors in Chicago. I’ll also try to see if I can send my images to Dr. Cognetti somehow. Seems a bit of a stretch to go see a doctor that far away if I’m not sure it’s even what’s causing it. Would be nice to find a doctor close by that’s more interested in getting to the root cause instead of just getting me out of his office. I’ve been looking for other doctors in the area that know about this but having a hard time finding one so far.
Dr Arrick Forrest in Columbus Ohio is very experienced with Eagles. You could call his office to see about sending a copy of your CT scan for him to evaluate. He told me to send either a regular or a contrast scan, so at the time he thought either kind was fine.
If you go to Chicago, the one on the list I would recommend seeing first is Dr Bove at Northwestern. He’s had some experience with Eagles. Again, you could call to see if you could send a scan.
Otherwise look for any skull base surgeons in your area, as they’re used to working around the styloids. Most people see ENTs, but some members have seen Neurovascular surgeons too. In the ES Info (in the Newbies Guide section) there’s a mention about some doctors who wanted to see a new classification of ES- (SHCS was suggested by Candice C. Colby, MD; John M. Del Gaudio,MD in their paper ‘Stylohyoid Complex Syndrome- A New Diagnostic Classification’ on JAMA Network.
As well as elongated Styloid Processes and calcified Stylohyoid ligaments they also suggested that elongated hyoid bone processes could cause tension and reduced distensibility of the SHC, irritating the surrounding cervical structures with movement of the complex).
So it is possible for hyoid bone problems to give symptoms too. When you get to see a more knowledgeable doctor, it’s worth getting them to look at the hyoid bone on your CT too.
Unfortunately most members struggle to get a diagnosis, and end up having to travel quite a way for surgery. Hope that you find someone not too far away soon.
Thanks so much guys! That helps my search quite a bit. And actually it seems as though Candice C. Colby, MD is based out of Grand Rapids. That wouldn’t be too far of a drive from me to see her so definitely a possibility. Still looking stuff up and hopefully make some calls Monday. I’ll let you guys know how it all goes. Guessing getting an initial appointment anywhere will take some time.
Well not a great appointment today. I tried to go to Northwestern but didn’t get an appointment with the doctor I wanted. Went instead and brought my CT and pictures printed from 3D program. Explained everything and the fact it’s been gong on over 6 months. She put me back on omeprazole for 2 months this time and thinks it may be indigestion related. Was on it for a month already with no symptom relieve and the fact that I have pain all the way up to behind my ears. She left to look at CT and said she saw nothing abnormal but it took her a whole 5 minutes. Also have to wear my mouth guard every night.
She said it could be some sort of bony growth causing compression when i asked her but said it was rare and wouldn’t be on both sides/didn’t fit with symptoms. Wish I would have pushed to get Dr. Bove. Was hoping for the best but turned out to be another setback and even longer this time. Another 2 months of dealing with this. And then longer for an appointment I’m sure.
Not 100% sure what to do at this point. Really wish I could find someone that wanted to get to the bottom of this, it’s not really getting worse but I’m over 6 months now of almost every day and it’s getting to be a bit of a struggle. She want’s to “troubleshoot” by doing this for 2 months but I’ve been dealing with it over 6. Have to keep looking into getting someone with some experience in this to look at my CT. But not 100% sure how to go about it.
WOW, Skip! I’m so sorry to hear how your appointment went. Sadly doctors “not in the know” tend to be dismissive. Many people on this forum have been diagnosed w/ acid reflux when in reality they had ES. Is it possible for you to make an appointment specifically w/ Dr. Bove and say it’s for a second opinion? It seems waiting another 2 months & taking a drug that is doing no good is pretty worthless. What happened when you tried to schedule w/ Dr. Bove the first time around - were you just randomly placed with whomever was available? Keep pushing for what you want. Remember, “The squeaky wheel gets the grease!”
Exactly what happened. I asked specifically for him but when the appointment was scheduled it was with another ENT. I had just hoped it was a colleague of his who would know what they were looking at. Not a great day overall but tomorrow I’ll get back on the horse and call around and see what I can do to get another appointment with someone else who’s in the know. Thanks for the kind words.
Also anyone wondering how they measure the styloid length and angles can see the pictures on that link. Also a good reference where they start their measurements at the base. Seems very similar to how we are all doing it on here with the 3D software.
Sorry that you were brushed off again- why do these doctors still insist on it being heartburn?! If you can get hold of Dr Bove’s secretary, then talk to her about getting an appt. specifically with him, and find out how you can go about that rather than seeing someone in the team… don’t give up and keep pushing! Or otherwise see if you can send the CT results to be evaluated first. And it’s worth printing out copies of research like the one you’ve found which back up your symptoms etc.
Thanks for the research too- I’ve not seen that one! I’ll put a link in the Newbies Guide. I would think it would be hard for us to calculate the angles ourselves, but it is an idea to request that with the CT report.
So I got to see Dr. Bove today. He could feel my styloids and agreed they are long. However when he pushes on them I get a sharp pain but it’s not exactly like the pain i get normally. Really i rarely get sharp pain but just an ache up to my ear however the pain from pushing on them is very specific to what feels like the end of the styloid. The left side is much worse than the right. He wasn’t sure about the sinus pressure though he said vascular eagle’s would present with dizziness and fainting when turning your head and really i just get this overall pressure in my head all the time, mainly my ears and sinuses. However, I assume the dizziness and passing out would be caused by compression of an artery. I wonder what if it’s compressing a vein instead. He did offer the surgery to me but said it would be almost as diagnostic as anything else. He felt maybe a 50/50 shot that my pain would go away and wasn’t sure about the pressure. He said when people come in and he can replicate the pain by pushing on the area that he gives it more of a 90/10 shot of going away.
I’m worried if it is compressing a vein it might be up really high and even if he breaks off most of the styloid I’ll still have the symptoms because it won’t free up the vein especially from an intraoral surgery? I know some of you guys have had odd symptoms go away after surgery though. Possibly even a sinus pressure type symptom so maybe it will help. He basically said i could call any time and schedule the left side and if it worked we could do the other as well. Not sure at this point though.
Would like to add Dr. Bove was really great at explaining everything being patient with me. Would definitely recommend anyone who has questions or needs an opinion to go see him.
I had bilateral compression of the jugular veins, and had the pressure most of the time in my head and especially in my ears, plus an off-balance feeling and dizziness. I had a CT with contrast, but from a different angle to most people’s- from the top of my head down through my neck, which showed where the compression was. The veins were compressed from really quite high up, but as my doctor was a skull base surgeon, he was able to take them off right at the end. I had the worst symptoms go within a couple of days, and felt better again after the second surgery. Although it’s not 100% back to normal, as the worst side vein hasn’t completely sprung back, but it’s enough of a difference for me to be over the moon about it!
So it does sound as if some of your symptoms could be from the veins being compressed, but who knows how high up that is? Sorry to not be very helpful- could Dr Bove not tell much from the CT? It sounds as if pain wise you’d maybe benefit from surgery, but as for the vascular symptom, no-one can say. You could see if you can find a skull-base surgeon in the area and try to get external surgery, although it’s not always guaranteed that they can get the whole thing out anyway- Isaiah had external surgery but Dr Samji found that a nerve was wrapped round the styloid so he wasn’t able to remove all of it, so you never know. Dr Bove is pretty experienced isn’t he, which is a good thing.
At the end of the day no-one knows exactly how many symptoms will go post-surgery, it’s a gamble for us all, I’m sorry that this isn’t an easy decision for you…
I just had my second surgery and had compression of both my Jugular and Carotid on my Right and when I turned my head on the left too [causing syncope]. I have not had syncope since my surgeries. Because of lack of data [research] on Eagles, I think doctors won’t tell you that your Vascular symptoms will go away with surgery, but it seems to me that many of us had just that happen with surgery.
If you have never seen the Golden Gate Bridge, come to San Francisco this summer for vacation and see Dr Samji [San Jose area =South Bay Area] - he works magic with his external surgery technique!
Well that’s not exactly my symptoms. For example when my neck hurts, the area on each side of my throat along where my arteries/veins are becomes tender. If i press in this area i get a pain that goes up toward my ear. At the same time I always get tons of pressure in my head. My ears and sinuses feel very full. The pain seems to be the worst right around where the styloid is but when he pressed on that area on the inside it hurt but i had no shooting pain. I continue to have this pressure almost daily that is pretty annoying. I’ve never been dizzy or anything like that from turning my head. Also i get no pain from turning my head only from slanting my head to one side. The side i slant to has pain which seems to be very close to the styloid.
Also I had asked him about injections in that area but he was unfamiliar with any sort of steroid or numbing type injection for the styloid. Only said that they do it for issues with the hyoid. I know some of you guys have had the injections before so I know it’s done but unfortunately he did not do them.
Also i think going to Dr. Samji would be great however I’m not sure exactly when that would be possible for me. I’ll have to think more about it.
Several people from this forum have traveled to California from out of state to see Dr. Samji. Using Air BnB or a similar site to find a place to stay is the most economical approach as you’d have to be out here for a week. Dr. Samji likes to see his patients on the Friday before he does surgery. He does most of his ES surgeries on Mondays and then requires a follow-up appt on the Friday after surgery. He does phone consults & if you’re interested in having one, I can email you his contact info (or you can get it off the US Doctors’ List).