My journey began about a year ago. I thought I was experiencing recurrent ear and throat infections. Then I started with dizziness to the point of falling and hitting my head. Besides ear and throat pain, I have severe neck pain, pain at base of the skull which worsens with head movement—also, right side facial pain and 3 bouts of losing partial vision in right eye. Within the past several weeks, I’m having pain in my arm with my arm turning a bluish color. Now my right leg is doing the same thing. My neurologist ahs oredered ct scans as well as the ER. My neurologist notes calcified stylohyloid ligament on right and well as elongated styloids bilaterally, right longer than left.
His Notes: Results
- Imaging:
CT scan (09/04/2025):
Compression on internal jugular vein and carotid
Left jugular vein significantly larger
Mechanical compression from ligament and styloid process on right and right carotid artery
Internal jugular vein significant narrowing from styloid C1 conflict on right side.
In the past few visits he wanted to send me to pain management for Migraines. After this last ct, he’s sending me for CTA-Venous, which is scheduled for November 12. I’m hoping this will definatively rule in or out, Vascular Eagles. I’ve read through a lot of posts, but I’ve not seen anything about arm, leg pain. Wondering if the arn and leg issues are related?
@Deebo2585 - Welcome to our forum! We have had other members w/ arm/leg pain that resolved after a styloidectomy. The leg pain in particular seems like a stretch to be caused by something in the neck, yet that pain did resolve for some members. We had one member I recall one member in particular who had the problem w/ her arm/hand turning blue, & she ended up having external carotid artery compression which resolved w/ styloid removal. She may have also had TOS (Thoracic Outlet Syndrome) & had surgery for that later on. That involves the first rib causing compression which affects blood flow into/out of the arm.
Before reading your imaging results, I was going to guess you have some carotid compression/irritation based on your neck pain & bouts of partial vision loss. The addition of IJV compression isn’t surprising.
Based on the findings in your CT scan & w/ the symptoms you have I can fairly confidently say you have vascular ES, but it’s best to hear that from a doctor. If that ends up being your diagnosis, you’ll want to see one of the vES specialists we have on our Doctors List, not a doctor who just does non vES surgeries.
Here’s a post from the gal I remember who had symptoms similar to yours. She also posted a discussion about how things went for her during her recovery.
It does sound as if you have Vascular ES, I agree with @Isaiah_40_31 , the only thing I would say is that you obviously had a CT with contrast which shows the vascular compressions, so another scan might not be necessary? Is your doctor experienced with VES?, and do you know what exactly you’re having done? If it’s pressure testing manometry some doctors do request this, although they might have specific protocols they need. If it’s another CT venogram then you’ve had this done?
If this was already found than it already confirms you have vascular ES. A CTA is not going to show anything your doctors don’t already know. Just don’t want you to be exposed to more radiation when you don’t need to be. May want to consider sending your current imaging that you already have to an ES surgeon on our doctors list to get their input?
I do have imaging. The doctor I’m seeing is a Neurologist with zero experience with Eagles. No ENT’s in my area of NE Ohio will treat EAgles. Some at Cleveland clinic do but they are not in my network. My neurologist isn’t even sure what he’s seeing is true compression and that’s why he referred me to vascular doctor for more tests. I have the cd’s with full scans that I pulled images to Radiant for 3D rendering at home but I need to figure out how to upload. I’ll try this evening.
@Deebo2585 if you can figure out how to copy the files on the disc and move them onto your computer and then move those files into a folder on google drive I can take a look through the entirety of your imaging. Sometimes we miss things with the 3D models and I’m quite good at going through the axial view of CT imaging
@Deebo2585 - We have a several doctors listed at OSU. Does your insurance cover care from OSU doctors? It seems like it should. If not, there is an appeals process you can go through to get care for something like ES when there are no doctors in your network who treat it.
•Dr Matthew Old, Otolaryngology, Ohio Sate University, James Cancer Hospital, Columbus (one surgery that we know of) *Dr. Old reportedly used a novel approach on a FaceBook ES Forum member where he removed styloid regrowth to the skull base & packed the skull base w/ cadaver bone to prevent styloid regrowth. (May 2021). https://cancer.osu.edu/find-a-doctor/search-physician-directory/matthew-o-old
Otherwise skip that step and see if there’s any way you can get scans reviewed by one of the doctors who treat vascular ES, (I’m UK so I don’t know if that’s possible to go out of state with your insurance?) like Dr Hepworth in CO, Dr Nakaji in AZ, Dr Costantino in NY or Dr Cognetti in PA?
I managed to get the CT with contrast images onto my computer. There are hundreds… any certain view you would need? how do I get them to you? They are .dcm files. I have been using radiant to open\view. Thanks for offering to view.. I’m at my wits’ end with all of these doctors that can’t tell me what’s wrong.
Thank you for the information. I chose Dr. Forest from the list in September and made an appointment. The called last week to cancel and were scheduling into March to see him. I’m barely functioning and can’t wait that long so I made an appointment for Nov 17th with Dr Matrka, whom I know nothing about. I’ve read mixed reviews of Dr. Old and he was booked way out as well. I’m going to look into the appeals process to see if I can go to the Cleveland Clinic. This group has been an enourmous source of support.
Wexner\Ohio cancelled my appointment twice! they are now telling me late February! I’ve had two appointments since August. Should I even schedule for February and hope they don’t cancel again? Cleveland clinic is not in my network.
Oh no, that’s not good at all! Most doctors have a cancellation list if you’re able to go at short notice? You could ask to go on that & ring regularly to see if there’s any appointments? I guess that the only other solution is to travel to see a doctor elsewhere, but I understand it’s not easy for everyone to travel, and also there’s insurance to consider…
So frustrating for you, @Deebo2585! I think you should go ahead & get on the schedule for late Feb. but start calling every day or every couple of days, as @Jules mentioned, to see if you can grab a cancelled appt. It’s been my experience that some offices say they keep a cancellation list but, at least sometimes, will give a cancelled appt to someone who’s been proactive in calling to get a cancellation vs those who patiently wait on the list. We’re approaching the time of year where cancellations are more common due to illness so there is a chance you may be able to get in before Feb.
