Finally got my CTA/CTV done and submitted to Dr. Nakaji’s office!
I don’t have good screenshots yet (I got the CD but having a hard time figuring out the reader).
However, I do have the report from the radiologist at the local hospital that did the imaging.
CTA/CTV Findings of note
"…Elongated calcified stylohyoid ligament is noted bilaterally. There is no significant mass effect upon the adjacent jugular veins…
…Large arterial structures of the head and neck are unremarkable without occlusion, high-grade stenosis, aneurysm, pseudoaneurysm, or dissection. The right transverse venous sinus is diminutive, a congenital anatomic variant. Large dural venous sinuses are otherwise patent. The right jugular vein is diminutive though patent… (emphasis mine)
…IMPRESSION:
Small right transverse venous sinus, felt to be a congenital variant.
Large arterial structures of the head and neck are unremarkable.
Findings consistent with eagle syndrome bilaterally."
I’m glad you have a report. Big step in the right direction. I hope you’re able to get the CD reader going. I know that can be frustrating. Been there!
I hope that he’ll be able to help you, it doesn’t sound from the scan report as if there’s obvious IJV compression? But you are symptomatic…whether it’s the congenital narrowing causing symptoms… but at least it does confirm ES!
Yeah, though unfortunately at this point I’ve pretty much stopped trusting what any non-Eagle specialists say (me? jaded? naaaaaah)
I gave the CD another try and was able to get videos and a couple key shots from different angles. I’m focused on the left side here as when I looked at the right side (the congenitally diminutive one), it didn’t appear to be touching the styloid.
I searched up the word “diminutive” on here and did some research on how congenitally diminutive IJVs can be related to Eagle Syndrome. I guess the issue can be on the opposite side from the diminutive one? Basically, the body is relying heavily on the dominant IJV and, if THAT one gets compressed it can have an outsized effect.
So, idk. Mostly waiting to hear back from Dr. Nakaji’s office at this point.
It looks to me like your left IJV is compressed it enough it may be having trouble trying to do the work of two IJVs thus it could be contributing to or causing your symptoms.
Exactly! It does look in the coronal like your C1 is playing a pretty big role in the compression, which doesn’t show in the first axial image, you’d probably need to look up or down of that image to get the full picture, but your IJV is flattened… It doesn’t look to me like there’s a massive impact on the size of the IJV overall, but I would guess as your other side is so small this is enough to give you symptoms… Hopefully Dr Nakaji will discuss all of this with you and agree to help!
For whatever it is worth, I did some math and came up with 66% stenosis on the left IJV. I looked up how to measure jugular stenosis, measured at the listed spots along the IJV, and followed the formula.
Obviously I could be very wrong as I am not trained. Also as you’re basically trying to find the area of an oddly shaped 3D item it is hard to get it right. On the other, tho, my measurements on my own styloid were spot on to what I eventually was told by Dr. Osborne, so. Idk. We’ll see.
Today’s comment is a testament to how looooooooooong it takes to get anywhere with this condition.
Going in my bi-annual dental cleaning today, remembering how 6 months ago I got the CBCT that enabled me to start seeking any sort of answers for all of this. I’d known for 3 years already that my styloids were elongated, but it wasn’t until I made a point of pointing them out on my routine CBCT 6 months ago that I was able to get any acknowledgement of it from the medical community.
The fact that I’ve been doing everything I can for 6 months to find more answers and that I haven’t gotten any further than I am…isn’t surprising but I feel it deserves to go down in writing.
To be fair, its not that I have made NO progress. As documented above, I did get a diagnosis from Dr. Osborne. If I had so chosen, I could have continued and sought more treatment with him, I’m sure. So the fact that I’m not doing that but am instead seeking second opinions speaks more to cost and access barriers.
But, yeah. That is all. Thank you all for bearing with me through all of this. It is odd: in real life, I am a very chipper person. I try my best not to led sourness or anger or upset dominate my conversations. As such, it is hard to come on here and know that my updates and comments won’t be joyful or uplifting to read. I appreciate all of the emotional labor all of you, particularly @Jules and @Isaiah_40_31, put in to help all of us, even when our posts aren’t fun to read. Thank you thank you thank you!
@Kmarty14 - We are here for the good times & the hard times and know from our own experiences the painful, frustrating journey of getting diagnosed & finding the right doctor for help with ES. I know that costs to travel & have surgery can be immense especially when medical insurance coverage is absent and many can’t afford them. Most doctors’ offices will set up a payment plan for those who can’t afford to pay for surgery in a lump sum, so keep in mind that’s a topic you can discuss as you seek the right doctor to help you.
I’m proud of you for continuing to pursue finding the right doctor even when you feel miserable. Is there anyone in your medical insurance network who is on our Doctors List, even if you do need to travel a ways to see him/her?
Really frustrating for you, being in the UK having to wait ages for appointments and surgery is common, so I understand how you’re feeling… You have made some progress though as at least you’ve been able to get a CTV done and that’s been sent to Dr Nakaji, you’ve done really well researching this and advocating for yourself, so it’s not all bad, be proud of yourself!
We want people to be honest, it’s great to hear positive stories of course, but it’s a place to vent and air frustrations too for those struggling…and we’re always happy to listen , encourage if we can and send you virtual hugs !
Sent a request to Dr. James Liu’s office yesterday.
Reached out to and heard back from a place associated with Dr. Constantino. (I’m not sure if it is now his primary practice or if he rotates.) Am now scheduled for a telehealth appointment on January 14.
Decided to reach back out and check in with Dr. Nakaji’s office. After 45 minutes of calling around, I found out that my local imaging center only sent them my imaging report. And that somehow the info I provided from Scottsdale Neurosurgery during scheduling for my imaging wasn’t used to inform how to send the records. Finally had to give up for today as I had to clock in at work. You can imagine my frustration at how asinine and ridiculous it feels at this point.
For updating the doctor’s list
As I was able to get in touch with Dr. Constantino’s staff, I sent the below to @Mod_support but I figure I’ll go ahead and drop it here too for good measure. By the way: the video I link below is VERY interesting. I am particularly intrigued by how (I think it was) Dr. Constantino says he doesn’t use the term vascular Eagle Syndrome.
My message to mod_support about updating the doctor list (this was sent before I got the telehealth appointment booked):
I have a couple updates to the Dr. Constantino listing.
Update 1 - No answer from currently listed info, not sure if Dr. Constantino works there anymore
I tried reaching out to the Shantel email listed. I also went to the website linked and followed their contact instructions. I did both things about a month ago and didn’t hear back from either.
This video that was recently posted featuring Dr. Constantino listed him (and other specialists working on this stuff) as being with the organization Institute for Specialized Surgery. It directed people to reach out there. So I reached out to Institutes for Specialized Surgery at info@iss.org as directed on their website. I received an email less than 24 hours later offering to book a consult for me.
CAVEAT: I did not specifically request Dr. Constantino in the consult, but he is listed as faculty at that organization. And I did request consult for jugular compression, so whether I see him or not, this info may be useful to others.
Thank you for the updated contact information for Dr. Costantino, @Kmarty14. I deleted the previous contact info for him because a number of people said they weren’t getting responses when they contacted his office that way. Since you got a pretty quick reply when you contacted info@iss.org, that seems to be a better point of contact now.
The link you posted has come up on this forum in previous posts, but thanks for posting it again to bring it back to the forefront. We know that most doctors don’t consider the term “vascular Eagle Syndrome” an accurate description for IJV or ICA compression as part of ES, however, it’s an easy way for us to cover both types w/ one title then discuss which one we mean more specifically. Stylocarotid or Stylojugular Syndrome are the more proper names. Dr. Costantino prefers Vascular Outflow Obstruction when discussing IJV compression.
It’s hard keeping up with the contact details, sometimes they seem to regularly change offices etc! Thanks for the info, @Isaiah_40_31 & I update the list as often as we get new info…
I hope that you can get everything sorted with Dr Nakaji’s office, good that you have an appointment with Dr Costantino though, & hopefully you’ll hear from Dr Lui’s office too!.
Re the terms Dr C uses, it’s a minefield, doctors all seem to have their favourite term for it, if you have a look at the titles in the Research Papers category, here’s a selection:
Jugular Venous Outflow Impairment , Styloidogenic-cervical IJV compression , Jugular Outlet Obstruction, Jugular Vein Nutcracker, Styloid/Jugular Nutcracker, Jugular Vein Occlusion…
