@Ifrit sorry to hear about the MRI 
I’m just realizing we took a look at your hyoid in the axial view but not yet your IJV compression. Can you go to C1 in the axial view? I’ve attached my own imaging to help you know what to look for. Top vertebrae with white circle in top middle:
This one’s not very clear, but it does the general shape. It’s what I’ve got right now. If it’s not good enough I could go in and get another one later if I’m feeling better.
They look pretty squished to me, but not terrible. The radiologist said there was no compression, but I’m getting the idea that the radiologist may have a different standard for what “compressed” means. Or it’s compressing when I move certain ways.
@Ifrit I agree with you - there is some compression but I wouldn’t say anything too crazy (but people seem to differ on how much compression it takes to cause symptoms). Your left it more squished I think where the styloid is touching the IJV. Your right IJV is your dominant IJV.
Just double check that the IJVs don’t become compressed further down - just follow them to the heart. Sometimes they get compressed by the SCM and anterior scalenes.
I actually got a 3D rendering of my jugulars!
I think that weird strip near the top is just from the scanner.
I wouldn’t be surprised if I have a spasmed muscle or scar tissue compressing something on the left. The front of my neck can be very painful there, lots of popping, clicking, muscles standing out strangely when I swallow. Lots of pain at the collarbone sometimes too. I was told I didn’t have thoracic outlet syndrome though.
Thank you for your help!
Collarbone pain can be pecs, anterior scalenes, and SCM. If near the sternum most likely SCM
I didn’t know. I thought maybe it was just a glitch from the scan, since it’s on the same level as the stripe on the other side. The carotid artery next to it has the same odd indentation at the same level.
Another possibility: I’m pretty sure my neck has been twisted with muscle spasms and who knows what else for months. A few weeks ago while I was doing my jaw PT, something high in my neck moved and my body started to un-twist. Now for the first time in months, my throat muscles don’t move at an angle when I swallow. I’ve thought that it actually looked twisted above where you drew the circle. It could be from severe neck spasms, and it could be that it’s actually resolved.
I’ve never had a Dr. say anything about it. I fear most of them still think all symptoms are due to anxiety. The brain MRI should at least change that.
@Ifrit I could take a look at your whole CT to see if I can figure out what’s going on. I’ve had a handful of members put their CT files into a google drive and send me a link to the drive. You’d no longer be anonymous to me, but I wouldn’t be sharing your name or any other health info to anyone. Let me know if this is something you think could help. Obviously not a radiologist or doctor, but could be helpful!
Well, I’m really sorry that you have brain slump on your MRI, I hope that you can get some answers as to the cause of that, but at least that’s something which can’t be dismissed by doctors! Thinking of you, it must feel like a long wait… 
Well, I made it!
Thank you all so much for your support. It has helped me during some very dark moments.
I had my appointment with Dr. Constantino. He said I don’t actually have much jugular compression, and he’s not going to diagnose me with ES right now, though it’s also not being ruled out. I likely have Chiari syndrome, so he’s referring me to a surgeon who specializes in that. We’re going to start there, and depending on what that guy says we could end up circling back to that stylohyoid calcification later. He hasys it’s possible that all of my potential ES symptoms could be explained by Chiari.
Guys, I have around 15 years of Drs telling me I’m crazy because i had bad necck pain and other weird symptoms and they din’t know what was wrong. The kicker? I first had a brain MRI for headaches in 2018. To my untrained eye, my brain in the 2018 scan looks the same as my brain last month. They didn’t say anything, or they didn’t see it.But I’ve had solid evidence that there was something physically wrong with me for 7 years, and I didn’t know it.
HAving EDS, Chiari decompression is NOT something that you want to do. But Dr. Constantino reassured me that if it comes to that, the surgeon knows what he is doing. I only hope that things can move faster now. I just want to be able to sew, chop vegetables, and mop my floor again. I want to be able to dance and do qigong again too, but right now that seems like such a huge ask.
@Ifrit that’s great you’re getting that looked into!
Can you upload a picture of the MRI? I don’t have experience seeing Chiari so it’ll be interesting to see!
Well, I’m sorry Dr. Costantino wasn’t able to help you up front, but it’s great that he referred you to someone he feels confident can help you, @Ifrit. I hope you’re able to get an appt very soon. I expect that once you see the right doctor, you’ll get the surgery or therapy you need & will be on your way back to being able to do the things you miss doing now.
I hope that it’s not too long to wait for the appointment again…beyond frustrating that if it was obvious in 2018 that nobody saw it!
Ben’s Friends also have a Chiari Malformation group, it might be helpful, here’s a link:
Finding support for Chiari malformation? Connect with people like you. - Chiari Support - Patients Community
Will you stick around on here & let us know how you get on please?
Yes, thank you. Dr. Constantino didn’t say that I don’t have ES. Just that I probably didn’t have jugular outflow problems and that we’ll have to consult a Chiari expert in order to tease out what symptoms are probably Chiari and what could still be coming from my calcified stylohyoids.
Good that he didn’t rush into a surgery which ultimately might not be the answer to all your symptoms, but I’m sure you’re desperate for something to be done soon
