Hi all! Wanted to introduce myself and share whats going on.
I’ve had a boney fit bump in my tonsil area for a long while. About 7 years? I had some initial pain which is how I discovered it but the pain went away and since it wasn’t causing problems I just ignored it. Over the past year I’ve been feeling a pressure in my face on the left side (side bump is on) as well as tinnitus, and some facial/eyelid twitching. I saw 2 ents. In the past 2 months. First one was terrible, disinterested, talked over me and I had to ask her to even palpate my tonsil area. She said she didn’t feel anything (which is wild because it’s very easy to feel without even applying pressure) and that she didn’t see a reason to do imaging.
After a month of doubting myself and googling amd finding this group! I reached out to another ent who felt the bump right away with no issue and said with my symptoms it could be eagle syndrome! She ordered a ct with contrast.
Since that appointment my symptoms have gotten more intense. Along with the pressure I’m feeling some actual pain at my temple, base of skull, inner ear/neck/throat, and my tinnitus has gotten worse and pulses sometimes.
I have my ct results back. The report from the radiologist says the results are partially movement degraded. And basically says everything is normal. But from comparing to other cts of eagle patients it seems pretty obvious my styoids are elongated. And I’m not sure but looks like I might have ijv compression as well? Though I don’t know if it’s just the angle
I have my follow up with my ent in 2 weeks but was wondering what yall thought of these images. It would be helpful to really know what im looking at so i can discuss it with my ent. Thanks in advance!!
Hi Hellebore, & welcome!
I do despair that a radiologist could look at those images and say it’s normal
your styloids are both elongated, the left one is incredibly long!
I’m sorry that I’m not able to annotate the images for you, but I agree you do have IJV compression, good spot, they’re bilaterally flattened, the left side particularly so looking at the axial image (1st image). Both are pinched between the styloids and the C1 processes, in the 2nd and 3rd images it looks like the C1 processes are significant in the compression, so I think you may need a C1 shave to feel the full benefit of surgery. They’re not the clearest of images, but certainly good enough to spot the IJV compression!
So I think it’s worth getting at least one opinion from one of the doctors who are experienced with Vascular ES; Dr Hepworth in CO, Dr Nakaji in AZ, Dr Costantino in NY, Dr Cognetti in PA and Dr Lui in NJ. Some do online consults, it’s certainly worth travelling to have surgery with one of them, as this is a trickier surgery it’s best to consult someone who really understands!
There’s a video by Dr Costantino posted by @carina which explains about the compression, you might find this interesting: Dr Costantino IJV compression and surgery - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope this helps & that you are able to see one of these doctors!
I am so sorry the radiologist missed your VERY clearly elongated styloids! I also had the experience of my first ENT that dismissed me for imaging. It’s an awful feeling and really makes you doubt your own intuition. I am glad you got a second opinion!
@Hellebore - Welcome to our forum! I’ve annotated the images you posted. Your left styloid is tremendously long & probably ends close to your hyoid bone. It’s also very angled inward. Your right one is also elongated but not as angled.
In the axial & sagittal images, you’re right, bilateral IJV compression is visible. It looks like it might be worse on the left side but both sides are significantly flattened. It would be best for you to see one of the surgeons on our Doctors List who specifically does surgery for IJV compression caused by styloid elongation/C1.
Thank you Jules! I’m glad I’m not losing my mind! Reading the report then looking at the images had me questioning what I was seeing! The Styloids alone seemed SO obvious. Hoping at my follow up with the ent we can sit down and look at the images together and figure out next steps. At our first appointment when she brought up possible Eagles she was very upfront about not have experience with the surgery so it’s super helpful to have some other surgeons names I can discuss with her!
I’m trying not to get ahead of myself but going out of network may not be an option for me. But my pcp and new ent seem very supportive and maybe they can help me navigate the insurance side of things if it comes to that!
@lsheep I’m sorry you experienced the same dismissal . I feel like imaging should be the go to first step if there are symptoms that you can’t outwardly see a cause of!
Thank you @Isaiah_40_31! The notes of the images are super helpful!
My left styloid is poking out by my tonsil, back/side of my tongue! It’s super strange. In the next few slides (not pictured) my right styloid actually keeps going and may be a tiny bit longer than the left! But my symptoms are almost completely on the left side. It’s so fascinating to see.
Thank you again for the recommendations to surgeons that deal with the ijv compression. I’ll be looking into both of them!
If you do have to go out of network to see one of the experienced docs, some members have been able to get this approved & we’ve had some info about how they did that, but that’s perhaps a little way off, don’t want to bamboozle you with too much right now!
Relooking at your imaging, I can see the “shadow” of the remaining part of the right styloid. It looks like it may be a separate section of calcified stylohyoid ligament or does it look attached to the main elongated section when you look at later slides?
@Isaiah_40_31 I think it looks attached and they are just deeper? but it’s hard to tell. Im assuming i swallowed while images were being taken which cause the blur in the middle/bottom half of my face? These are the 2 following slides in the ct that show more of the right styloid. Let me know what you think! I wish I could layer them but I’m not tech savvy and only have my phone to work with
It does make sense the right side could be growing angled at a deeper level than the left one. Thanks for trying to piece it together. I still can’t tell for sure if it’s one piece but I think there’s a good chance you’re right. It really doesn’t make a lot of difference since you have enough styloid/stylohyoid ligament calcification in your neck to be causing the symptoms you have.
Hi all, just wanted to give an update. I had my post ct scan follow up with my ENT. Not much new info. She thinks it could be Eagles (I’m pretty sure it is at this point) but stressed she does not experienced with it enough to say for sure and she didnt really say anything when i asked about potential ijv conpression on the ct. Good news is that she is referring me to Dr Jalisi who is the chief of otolaryngology and head and neck surgery at Beth Israel is boston. My ent had reached out to him before our appointment today and he had said he is very familiar and has written papers on it so im looking forward to makong an appointment woth him. I’m just happy the ball is moving forward.
That’s all good news, @Hellebore! If you want to post some of your images on the forum, we can also take a look at them & comment. Sometimes that’s helpful as then you’ll have more specific discussion points when you see Dr. Jalisi.
You can convert your CT images to 3D using radiantviewer.com for PCs or Bee Dicom Viewer App for Macs. That makes it easier to see what’s going on in your neck. Please make sure to cover any personal information on pictures if you do post some.
He looks like a very experienced head & neck cancer surgeon- we were told that these surgeons often have to remove the styloids to access tumours, so hopefully he is knowledgeable with ES! I couldn’t find any research papers by him about ES though…
@Isaiah_40_31@Jules sorry for such a long delay in response! Life got real busy for a bit. I had my appointment with Dr. Jalisi today and it went OK I think but i have a lot more questions. His PA who I saw before he came in was so nice and very thorough and he was very friendly and answered all my questions. I’m officially diagnosed with Eagle Syndrome. I’m thrilled to have an answer to that. But he thinks the bulk of my worst symptoms are unrelated and have more to do with the upper branches of the trigeminal nerve which he said are not affect by ES. He also didnt seem to think im ijvs were any issue at all. So he wants to to see a neurologist before making any further decisions about surgery (which he said he was happy to do if I decide I want to go that route)
A bit about his experience to update the Dr list for massachusetts. He said he has done a dozen or so styloidectomy related specifically to ES in his career but also routinely (multiple times a week) does exptensive surgery in the area of the styloid at the skull base and has removed many a styloid to access tumors and such as Jules had mentioned might be the case. He was very confident lol. but definitely stressed the risks and having surgery be a last resort.
Now to find a neurologist and start this cycle again
I’m glad that he was helpful, but a shame he wants you to see a neuro first. We have had members who’ve had Trigeminal nerve pain in all 3 branches, and the facial nerve is commonly affected too which has a similar pathway:
I completely agree with @Jules & will confidently say that Dr. Jalisi is wrong about the upper branches of the trigeminal nerve not being affected by ES. Mine were! As Jules said, the facial nerve has similar pathways so could be contributing to pain with which Dr. J is crediting the TN.
If nothing else, I hope you’re able to have a constructive conversation with the neurologist about the facial & trigeminal nerves so you can move forward to surgery.
Thank you @Jules and @Isaiah_40_31. That’s what I had thought and I know I had read about other folks having similar issues on here but wasn’t sure if it was maybe related to something other than eagles. I’m going to set up an appointment with a neuro and see if maybe I can get other imaging done to confirm where the different nerve irritation is coming from. I also read that TN can be cause by IJV compression in certain circumstances.. and while he seemed unconcerned about that I’m still concerned given some my symptoms and my ct scans.
I’m also going to try and get an appointment with Dr Annino. I know he doesn’t do vascular es but I’m curious if he thinks just a styloid removal will help decompress? I jist want a more complete picture of exactly what’s going on before getting surgery so I can make sure I make the right choice.
Thanks again! I’ll make a new post when I have more info
Thanks for posting this article, it’s really interesting, not heard of IJV potentially being a cause of TN before! A FIESTA/ Ciss MRI can sometimes show if blood vessels are compressing nerves at the skull base, that would be the only imaging helpful as far as I know, but this can be quite difficult to get done.
Obviously it’s your choice to see Dr Annino, he has done successful surgeries, but you would need a doctor skilled with Vascular ES to do the surgery, so not sure how experienced he is…the surgery is trickier and often the styloid needs to be removed very close to the skull base to help with relieving the compression even if it was just the styloid which needs removing.
. I feel like imaging should be the go to first step if there are symptoms that you can’t outwardly see a cause of!
