I’m new on this forum and have been really impressed by the wealth of knowledge here!
I’m helping my sister pursue a diagnosis and am trying to learn as much as I can about ES and compressions. She has Ehlers Danlos and has had symptoms of brain fog, POTS, double vision, and air hunger (among other symptoms) for the last 25 years. She’s had a ton of testing during this time, including for CCI, which was negative.
She recently had a CT-Venogram of head and neck. With her permission, we’d like to share some images here. I just now learned how to make 3d images, so apologies if they don’t show the most relevant anatomy. If there are any other areas of the CT I should share, please just let me know.
Also, some good news - my sister has been able to get in touch with Dr. Hepworth’s office, and his team will eventually be able to give her an evaluation.
@sarah_sister - Welcome to our forum! I’m glad you found us. You did a great job w/ the 3D conversion & posted helpful imaging.
Your sister has a significantly compressed left IJV which appears to be caused by the transverse process of C1 as there is a good amount of space between the left styloid & C1. There could also be some soft tissue (muscle, nerve, scar tissue, lymph node, fascia, etc) compression as well, but that can’t be seen in a CT scan & is sometimes only observable during surgery.
I couldn’t see her right styloid but do see a segment of calcified stylohyoid ligament which alone can be causing discomfort due to nerve irritation & can sometimes cause vascular compression further from the skull base, most frequently, to the internal or external carotid artery.
She has also lost her natural lordotic cervical curve which can be the result of styloid elongation/IJV compression as the body tries to take pressure off the IJV so it can function better. Loss of the lordotic curve does bring the styloids & hyoid bone into closer proximity to nerves & vascular tissues. It’s correctable over time via gentle PT exercises, but we recommend not working on that until the IJV decompression & styloidectomy have been done.
Compressed IJV is circled in pink. You can see it’s a flattened oval vs. round like the right one appears
Hopefully your sister will be able to get help from Dr Hepworth, as @Isaiah_40_31 & @TML have said it looks like the C1 on the left is compressing the IJV, it would be good to get his opinion on whether there could be other soft tissues involved in the compression too…
It would be good to get the styloids removed too as some members have found that their POTS symptoms improve, brain fog can be caused by IJV compression, and also visual disturbances, & I wonder if the air hunger might too, as vagus nerve compression can potentially cause this, I found this info online:
’ [Vagus nerve irritation can indeed contribute to air hunger. This irritation can disrupt the normal functioning of the vagus nerve, which is responsible for regulating various bodily functions, including breathing. When the vagus nerve is irritated, it can lead to symptoms such as difficulty swallowing, dizziness, and gastrointestinal disturbances, which may include air hunger. The vagus nerve plays a crucial role in the respiratory system, and its dysfunction can result in respiratory distress and other related symptoms]'(https://www.bing.com/ck/a?!&&p=d8d037a717414fc6c98aa72d1e91d5f6ee36a64621381fb17ae5a9f61a8c1ad1JmltdHM9MTc2MTM1MDQwMA&ptn=3&ver=2&hsh=4&fclid=3477ce04-d78a-6408-31f5-c0e0d6ca650d&u=a1aHR0cHM6Ly92YWd1c25lcnZlLmNvbS91bmRlcnN0YW5kaW5nLXZhZ3VzLW5lcnZlLWFuZC1pdHMtaW1wYWN0LW9uLWJyZWF0aGluZy1wcm9ibGVtcy8&ntb=1)
