The interesting thing about this is that I went through denial after denial that it could be the cause of my problems (including with a toxicologist AND even after I had proof from Mayo urine test) but then a year later the Clinical Pharmacologist said "Oh yeah ,it is well known it accumulates in the body
Don’t take vitamin C
Don’t take vitamin C after the MRI if you have used contrast? Is that what you mean?
It seems to me that you shouldn’t take vitamin c at least a week before or a week after a MRI with gadolinium and avoid foods related to that study .
I am going to contact the researchers, tell them what I have discovered, and offer my tests to them if they want them .
I think it is very likely there is another contributory factor in this but if you take away a known issue you might not get a reaction or maybe less gadolinium will deposit in your body
Any help would be appreciated thanks.
Hi Denese,
I’m not sure which is left & which is right i.e. if the image is flipped or not. Usually the left side of an image like yours is the right side of your neck & the right side of the image is the left side of your neck. This image is missing landmarks I’d look for to determine left & right.
Based on what I’ve just said, if your image is in typical position, then the styloid is on the left & the section of calcified ligament is on the right.
I’ve annotated your image below. It looks like your elongated styloid may be poking your internal carotid artery (ICA) which could give you TIAs (transient ischemic attacks i.e. mini strokes), headaches, neck/heart/eye pain & possibly temporarily limited vision in the eye on the same side. Do you have any of those symptoms? Your jugular vein on the side w/ the very long styloid is also quite large. Whether that’s your dominant IJV or it’s compressed, I also can’t tell via the image you’ve posted.
Hi Isaiha,
This is Matt, Denese is my wife who helps me post. I have the styloid process and Eagles. 8 years this December.
Those images were done two weeks ago using contrast and they had me turn my neck to the left the whole time. Unfortunately I was pretty high on lorazapam tablets as I was extremely anxious about the contrast.
Right at the beginning I had extreme pain in my head, shoulders, neck temples and back of neck/skull. You could not touch my temples and even water on the back of my skull from a shower would make me want to vomit from dizziness. The headaches were ….well migraines for three and a half years every single day..
8 years on, and the pain has gone, however I still have serious balance issues which have gotten worse. Extremely sore neck/tightness and I experience dropping episodes if I get up to fast. Everything is tight and locked up, neck, shoulders, back etc. My blood preasure is somewhat low 110/72 so not high.
I am due to see the specialist next week on Thursday 13th our NZ time. ( we are a day ahead of you) its Saturday the 8th as I write this reply 7.15pm in the evening.
Its interesting you mention mini stroke as that’s one of the things the Doctor (GP) first thought I may have had. Back then I had eye problems and all the above stuff already mentionedplus wicked brain fog etc.
I was able to get my GP to read the specialist notes from the hospital last week after my scan. It read that the styloid didn’t appear to be hitting anything? However over here they do not use that 3d images like you guys do in the Pic I’ve supplied. I think they read them from the xrays etc? Im not sure. We have sent through a few of the 3d images for the specialist to look at, hopefully we can get some answers this Thursday.
Any help is very much appreciated, I really do think you guys are lovely on here and very helpful.
Thanks again
Matt and Denese.
Unfortunately not all radiologists are experts at reading the scans, and sometimes dismissive of even clear compression! It does sound like some of your symptoms could be carotid artery compression, like dizziness & possible mini-strokes. Internal jugular vein compression can also cause dizziness, headaches, and balance issues, and also as the vagus nerve is next to the IJV where it emerges form the skull, this can cause BP issues, which could explain dropping episodes if you get up quickly. (We’ve had quite a few members with POTS which you could look into?)
Just having had a quick look at the new imaging you’ve posted, it looks like you could well have IJV compression between the styloid and the C1 process on your right side, and potentially the left too. Plus further down , around C3 level, it looks like there’s possibly an artery each side which might also be compressing the IJVs? I’m sorry, I’m not tech savvy enough to label images. It’s not always possible to say for sure, it can be helpful to look at imaging in different views to be confident of this- @TML is very good at spotting compressions in the axial view of images.
But your styloids look pretty long on these images, down to C2!
Thank you so much Jules. I remember the GP last week saying something about the hospital notes that there seemed to be a narrowing of the artery but tbh unfortunately I have ADHD so information goes in one ear and out the other. Denese wasn’t present at the GPs visit but she is able to attend next week.
Again, we are very greatful for any help and advice you guys are incredibly helpful 
P.S
Almost forgot, because I’ve been living with these strange symptoms for so long you tend to just forget them all, but in the last 12 months I’ve had trouble swallowing, which leads to choking and a sensation that somethings stuck in my throat. I feel this is on my right side which is weird as all other symptoms are on the left.
Also, unsure if this is related or not, but wet ear wax only in left ear. Left nose constantly blocked with snot, always blowing my nose which leads to a very weird poping sensation then instant horrible balance feeling. I carnt blow my nose to hard at all.
Just want to add that none of my GPs had heard of Eagles Syndrome until my case.
@Denese I would be happy to take a look at the entirety of your imaging to assess the full length of the neck for any compressions.
Members typically put their CT files into a google drive folder and then private message me a link to the folder. You would no longer be anonymous to me but I wouldn’t be sharing any of your personal information. Let me know what you think
Hi TML this is Matt. Its 4.17am here so when Denese wakes up I will ask her how to do this for you.
THANK YOU so very much. I’ve just woken up from a choking episode and jumped on here as im mow awake hence me reading this.
Thanks again.
Matt
Hi TML
I deleted a post I tried to make to you as a personnel message with my scan file, and have tried again to send it to just you. Apologies, not too good with this modern technology.
Can you please let me know it you get the personnel message and file.
Many thanks
Denese and Matt
@Denese - Hi Matt,
You’ve done a nice job of converting your CT scan to 3D images. In the first image above, your C1 vertebra is clearly shifted to the right which means it’s likely compressing your right IJV against your styloid. This is confirmed in the second image which I’ve annotated for you & is below. I also agree that the left IJV may be suffering some compression by C1 but far less than the right side. It looks like your right IJV is dominant based on how much larger it is than the left side.
I’ve annotated an image of your left side as well. It looks like your IJV is being compressed by C1 up near your skull base & an artery, maybe the internal carotid around C3, but the artery itself also looks compressed based on the bulge (circled) it contains which is at the point at which the IJV is being squashed.
Hi Isaiah,
Thank so much for all this. Denese has sent all the images via a DM to TML today, we hope we have done this correctly and it is able to be seen.
I really hope that this appointment with the Specialist this Thursday will result in some positive feedback as to what’s next for me. Im not sure what to do next tbh but I do know im sick of feeling unwell.
My GP worried me when she read the hospital report as they said it wouldn’t appear the styloid is hitting anything which makes me even more confused. However they have not seen these 3d scans that we are looking at.
Will this ever be over with? Can surgery auctly fix these horrible symptoms? I so desperately want my life back again.
What would you do if you were me? Im kind of running out of hope in our health system tbh, its taken so so long to get to this point, so frustrating. My own GP even said you pretty much have to have the stroke in New Zealand first before you get any help. That was heartbreaking to hear.
Thank you again, and also to everyone else 
You’re not alone being frustrated with your healthcare system! I’m UK & it’s getting increasingly hard for members to get treated on our NHS , and the waiting times are really long, Canada is awful too… There are a couple of doctors on our list in NZ if the specialist you see doesn’t understand ES it would be worth trying to get a referral to someone else :
Mr. Kevin Smith, Otolaryngology Head & Neck Surgery Specialist, Auckland - https://headandneckservice.co.nz
•Dr. Charles Davis, Plastic & Craniofacial Surgery - https://charlesdavis.co.nz
•Mr. Muammar Abu-Serriah (in the same office as Mr. Kevin Smith)
@BraveKat has had surgery but still has some issues… It’s difficult with Vascular ES but surgery can be successful, it’s hard to know whether just the styloidectomy will make enough space for the IJVs to re-open, or whether you might need a C1; @TML might be able to tell from more images if the C1 is involved with the compression. I was lucky & didn’t need a C1 shave, just removing the styloids was enough to stop compression & stop the vascular symptoms.
TML is amazing 
and so very very patient. What a mission with uploading and sorting my images but Denese got it sorted and TML was very very patient with us. We have absolutely no clue what we were doing but worked it out in the end.
I did have an appointment this Thursday to follow up with the ENT at the hospital after having my CT with contrast. However they have had to cancel due to doctors sick and carnt see me now till 23rd December some 5 weeks away.
Its extremely frustrating but what can I do but hope and wait I can get some help. This will be 8 years this December I’ve been ill with this, im trying to stay positive but im just so broken right now.
Thank you to everyone on here who have helped and supported us, we carntthank you enough.
Kind regards
Matt and Denese
@Denese (Matt) -
This information is very sad indeed. Perhaps it’s good your appointment got cancelled as you’ll have a solid case to present at your appt. on Dec. 23 once @TML annotates your images & describes what he sees. Being able to go to the doctor knowing what your scan shows will keep you from being fully at the mercy of the doctor’s opinion. It gives you a foot to stand on so you can argue for the surgery/treatment you need. If you’re too spent to do that, then let Denese or another family member or friend advocate for you.
Keep your head up & be as optimistic as possible. @Jules & I will be praying for you to find the help you need.
You guys are the best THANK YOU so much. Im exhausted there’s nothing left in me to fight tbh.
I know I shouldn’t say this, but I’ve spent the last two days trying to phone the ENT department at the hospital to ask if my specialist will be there on the 23rd considering its two days before Christmas, and I carnt even get anyone to answer the phone.
I appreciate they are over worked, I appreciate that others are sick, but I also understand that this thing is getting worse and im just sitting in no mans land waiting……
Its heartbreaking.
@Isaiah_40_31 I accidentally sent @Denese their annotated imaging via private message. I usually come back to the original post to post them so that it adds a learning piece for everyone in the forum. Here is my write-up of @Denese ‘s imaging. I also told them that many NZ members see Dr. Elliot in Australia, so I recommended that. Not sure if you or @Jules has anyone else in mind for New Zealanders?
“It appears that the CT was taken with the head looking to the left.
Between the skull base and C1, your right styloid is compressing your right IJV. Your left styloid is touching your left IJV, but not compressing it.
At the level of C1, the right IJV is wedged/compressed between the right styloid and C1. No compression at this level on the left side.
At the upper portion of C2, the left IJV becomes compressed by the left ICA. This is because it appears that your ICAs are “tortuous” in that they move from and anterior (forward) position backwards and make contact with the IJVs on the way by.
A bit further down, your left IJV becomes very compressed between your left ICA and left SCM.
I have attached 3D models in a following message. These show length estimations of your elongated styloids, as well as some bone or calcification that seems to be floating in the back of your neck.
Keep in mind that you are looking to the left in the imaged position. It’s hard to say what things look like when you are looking straight or to the right.
Reminder that I am not a doctor nor radiologist. Hope this helps!”
