Hi!!
I am new and just trying to seek out answers and opinions, so thank you in advance!!
2020 I started with weird MCAS symptoms and weird symptoms I couldn’t really understand. It started with flushing red nose ONLY, painful hand veins and blood pooling. Later found this was dysautonomia. I went doctor hoping until I found a chronic blood clot behind my collarbone. I ended up spending the year trying to get diagnosed with thoracic outlet syndrome. I finally did, had a venogram which they were able to balloon my vein. A month later I had my first rib removed, anterior and middle scalenes, omohyoid muscle and the muscle under the collarbone. My symptoms have gotten a bit better but I still feel something is off. I was hoping to get anyone’s feedback or opinions? Thank you so much <3
Hi @alessandra! I am not the best at label imaging since I am pretty new but I wanted to say hello and welcome!
@alessandra - In the lower GIF I can see your styloid & C1 causing some IJV compression, but since I can’t pause the video, I can’t annotate that particular “scene” for you. Can you put up some still images?
Hi & welcome!
I agree with @Isaiah_40_31 that there is compression of the IJV between the styloid process & the C1 process, but couldn’t pause it to see if it’s definitely the styloid or a section of calcified ligament, and how much the C1 process is causing compression- if this is significant then the C1 process might need shaving as well as the styloid process/ calcified ligament need removing… but I’d say you are on the right track so it’s worth looking into Vascular ES as a diagnosis. Some of the doctors on our list are more experienced with VES, Dr Cognetti might be a good bet for you to try and see as he’s in PA, or Dr Costantino in NY, or Dr Lui in NJ. Here’s a link to the doctors list:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope this is helpful!
Hi!! Thank you!! I realized I had the other side! This side is my more problem side, and the side I had vTOS. Are these ok screenshots? I dont know what I am looking for!
Hi!! Thank you so much. I actually realizedI had the wrong side of my scan, as my right is actually my problem child haha. I had Vtos on the right. I added some photos of my right side even though I do have symptoms in my left. I also have history of AVM bleed in my cerebellum.
hi thank you so much!!! I appercaite it <3
@alessandra - I’ve annotated one image, and based on the imaging you sent yesterday, it looks like you have bilateral IJV compression. You also have a very chunky hyoid bone which may or may not be contributing to your symptoms. Until yesterday, I’d never seen one that looks like yours, but another new member @PeanutsMom (Newbie here - seeking thoughts and opinions) has a very similar looking hyoid. I did a double take when I saw yours!
You’ve lost the natural cervical curve. When the cervical vertebrae straighten out, the styloids & hyoid bone move closer to nerves & vascular tissues in the neck & the upper cervical vertebrae can also move slightly forward with the same result. This is called military neck & can be corrected with simple, gentle PT exercises but it takes time & patience as the process is slow. List of my favourite resources on YouTube to learn anatomy
WOW thank you so much. I will literally do anything if I can do it!! So thank you so much for all that I formation. I added this video above. Not sure if it will work https://files.fm/u/xkr35skazw
@Isaiah_40_31 wow, what are the odds!? What a funny coincidence. Thank you for the connection and insightful input! I’ve uploaded some additional scans to my post as well. Many thanks!
Hi!!! I wonder if we are having the same symptoms! My list is a long one 
I’ll just add to @Isaiah_40_31 's assessment that it looks like there’s a fair bit of compression with your C1 vertebra as well on those new images, so you may need a C1 shave… But please bear in mind that we’re not doctors!
Hi @alessandra! I hear you on the laundry list of symptoms, sigh. These are certainly complex and interwoven medical issues. It does sound like we have a fair amount of overlap, with some distinct differences as well. Whatever the case, chunky hyoid bones unite! best wishes to you 
Thank you so much! This has been so helpful 