What do you guys think would be the best scan to get to see the styloid’s? What have others had? CT scan of the neck with contrast? Something else? Originally I was seeing an ENT for an ear problem. I had a CT scan of my head October 2019. About six months ago an ENT looked at this old CT scan when I was there for an ear problem and just casually mentioned to me that I have eagle syndrome. So that was the first time I have ever heard it. I haven’t done anything else about it since. I would like to get a new scan since all I have is a CT from 2019. I did have an MRI of my head early last year.
But I am looking specifically to see what scan I should get for styloids.
I’m in a predicament where I’m not sure if my symptoms are being caused from my ear problem or from this eagle syndrome that I supposedly have. With both requiring surgery I would like to know which one is most important because I’m really tired of feeling the way that I feel. So if anyone can help with a recommended scan that would be nice I would like to hear from you guys and then approach my doctor about it.
A CT of the area between your skull base & hyoid bone w/o contrast will give the best image of your styloids & possible stylohyoid ligament calcification both of which can cause ES symptoms. A CT with contrast is generally used to diagnose vascular ES (compression of the internal jugular vein or internal carotid artery by the styloids). Since a CT w/ contrast shows soft tissues as well as bony structures, it can be harder to determine styloid length & other features of the styloid that might cause symptoms as the soft tissues can partially cover the styloids & s-h ligaments.
Since your symptoms are predominantly ear related, I’m guessing you don’t have vascular ES. Ear issues are a very common ES symptom & are usually related to trigeminal nerve irritation by the styloid.
It is my opinion that if you have ES, getting your styloid(s) taken care of first will possibly resolve your ear problem without you needing additional ear surgery.
Food for thought: A number of our members have had unnecessary & ineffective surgeries to correct problems that were caused by ES when getting their styloid(s) removed was what was needed.
That’s a good one…"casually mentions you have “Eagles”? YOU are lucky he at least recognized it and brought it to your attention. If you have a CT scan without contrast from 2019, you don’t really need another one. What I would request is that the ordering doctor of that CT scan back (or even ENT) then request the radiologist to re-review the scan for Eagles Syndrome and get measurements of lengths for you. It may have already been done? and in the radiology report which you can request yourself. You can also just ask the ENT to give you measurements although many dont measure the same way?
I have had personally alot of ear involvement but I also have cervical neck instability and TMJ. The TMJ issues definately cause me trigmeminal nerve to flair and can impact my ear (and temporalis muscles) however I found my C2-C3 area of neck to also impact my ear.
My question would be what kind of ear surgery is your ENT suggesting? What are ear symptoms that suggest it is needed? re: diagnosis?
My last suggestion would be to get that CT scan on disk and the report and take it to a KNOWN experienced ES surgeon for an expert opinion. An ES specialist can walk you through the scan and explain what might be occurring and what is causing your pain. I would suggest this 2nd opinion before having any surgery…especially ear.
It can be hard to sort out what causes what pain. Mine started with shooting nerve pain from the middle of my neck up to my ear which ended in what I describe as an explosion of pain in my ear.This is why I first went to an ENT. Ear hurts so it makes sense. They did MRI and couldnt find anything and sent me on my way. (5 years to get diagnosis as ear pain worsened) I also felt like I had a bone in my throat. (classic ES) I have no doubt that was inflicted by the elongated styloids pressing on nerves. I chose to take care of the styloids first as alot of my symptoms matched up. Now that I have had them out, I am addressing the TMJ issues. Its kind of process of elimination thing for me. Its often more than one thing going on.
The one thing that did help me first was a round of oral steroids which brought the swelling down and calmed the nerve irritation. I eventually moved on to steroid injections below the ear and around the styloid areas. If you are in serious pain, it at least calms it down until you can figure out your next steps. Hope that helps
My CT was without contrast. I do have a lot of facial nerve problems. My left ear constantly has a full pressure feeling in it. The left side of my tongue goes numb a lot. Feelings of something stuck in my throat quite a bit. Headaches at the base of my skull frequently. I get dizzy easily when I turn my head to the right. I did post in this group back in March when I was first diagnosed but I’ve had so many things happen since then I have not moved forward yet. So I was considering trying to get a new scan before making another appointment with the ENT. I wanted one of them, to see if they could pinpoint which surgery was the most important. It’s just so overwhelming. And such scary feelings sometimes. I also have an unrelated stomach problem apparently and yesterday I found out bloodwork for lupus was positive. I’m just super stressed.
I do know that my eardrum is severely retracted in ear. I have history of surgery in the ear from a long time ago 1998. I had a cholesteatoma which is a benign tumor removed back then. I have a ton of calcification in the mastoids area from that. I was just thinking if I got a scan that was newer than 2019 maybe we can tell for sure if my problems are from the ear or the styloids. So it made me wonder if I should get a CT of my neck or a different one of the head. The one I had in 2019 was a CT of the head without contrast. I do have left-sided numbness and tingling of my tongue, dizziness if I turn my head to the right sometimes I feel like I’m going to pass out. I’ll literally have to look the other direction to make it stop. I have sensations of something stuck in my throat. My throat feels sore often. My ear has a pressure fullness in it. Sometimes I feel like my head is underwater on the left ear. I posted in this group early this year I believe around March when I first heard the diagnosis of eagle syndrome. And yes the doctor mentioned it like it was nothing so I left his office not thinking anything about it at all. Later that night I googled eagle syndrome because I had never heard of it and then I got really stressed and worried but I also was dealing with Laryngeal pharyngeal reflux. Then shortly after that I started having significant pain where my ribs meet from carrying a heavy chair is what I believe the problem was long story short I’ve had a stomach problem since like March that it’s not related to the reflux. I haven’t been able to wear a bra since then. My doctor doesn’t like to take anything serious so he was still trying to tell me it was acid reflux and give me more medicine even though I could definitely relate it to lifting a chair. Then yesterday I had bloodwork come back positive for lupus. That actually happened after I made this post the other day. I am super off-topic now I guess maybe I’m just venting because I feel bad and stressed and worried about everything I have mentioned above.
But I would still like to get either the ear fixed or the styloid I just definitely don’t want 2 surgeries at one time so I was trying to figure out which one was my best option
Wow, lots of ear problems. So sorry about the lupus diagnosis. 
That adds a layer of complexity to your issues. I can only suggest you try to compartmentilize the different diagnosis’s and focus on one at a time or make a plan which one comes first. Im pretty certain the tongue issues are likely glossapharengeal nerve often decompressed during ES surgery. The stuck in throat thing is classic eagles.
Given your 2019 scan was of the head, I would suggest CT scan without contrast of neck for specific evaluation for Eagles Syndrome. It will only focus on the neck and base of skull down to hyoid. I would agree doing this first is probably the best next step. In the meantime while you are acquiring the CT scan (get ASAP), try and make an appointment with ES specialist as it may take a couple months to get an appointment unless you are willing to travel or send your scan to just a few ES specialist who will review and do video appts for consultations. If you can get your hands on report from previous CT scan or records from ENT that said you had Eagles at that one visit, I would request those records to help set up that ES specialist appt. Alternately, you can pick someone and ask your ENT to send a referral over so they can get you on the books for an appointment.
I suspect lifting the heavy chair may have torn or pulled something since the pain was acute. Is it possible the lifting messed with the reflux surgery? If its in rib area, likely not. Rib fracture? Those can be pretty painful and can take a very long time to heal.
Im not sure who diagnosed your lupus. Was it your PCP or was it a rhuematologist? Try seeking out the right doctor who is experienced in treating lupus which is a rhuematologist. Just like Eagles, finding the right specialty who has a high level of expertise is crucial (my opinion)
Back to your previous ear surgery and removal of cholesteatoma. My research indicates that sometimes they need to be retreated. That can be associated with some of your other symptoms also. I am assuming this has been evaluated? You didn’t indicate what surgery the ENT was suggesting on your ear right now? Perhaps expand on that some for us.
Bummer about the calcification in the mastoid area. If you have calcifications there, it makes sense given so close to styloid area you would have additional calcifications.
Get the CT scan of neck, get second (expert) opinions on both ear and Eagles surgery. If you are overwhelmed with the additional lupus diagnosis, put it on back burner and slowly educate yourself on it. Deal with what bothers you the most first. Hope that helps.
Vent away! Can’t give you much advice but happy to listen…Ben’s Friends do also have a Lupus forum, so you could have a look at that for friendly info? Here’s a link:
Life With Lupus - Support community for Lupus
Sending you a hug & thinking of you 
bjane,
The fact that you’re experiencing dizziness when your head is turned to the right, & it stops when you return your head to neutral, suggests you may have vascular ES after all. That symptom plus the underwater sensation in your head/ear also suggest IJV compression when your head is turned to the right.
See if you can get a referral for a CT without & with contrast (this is possible to be done in one appt.). You will need to request the contrast CT be done with your head turned to the right (in the position that causes the dizziness), otherwise, the vascular compression will likely not be visible.
Great idea Isaiah! You and Jules have so much knowledge on the IJV compression. I learn so much from you both.
We both appreciate all you know about EDS, POTS & CCI & appropriate tests & doctors to see. We’re a team here, eh, Snapple?!
Yes we are! Luv you guys. 