Hi @modica! Welcome to our forum. You certainly do have a load of miserable diagnoses/symptoms. I am sorry you’re dealing with so many things at once.
I’m sorry your symptoms have forced you to slow down. I can completely relate to that frustration. I was a long distance runner for 12 years (not a D1 level athlete though) & had to stop, too. I also had the elevated heart rate issue during higher intensity aerobics as one of my ES symptoms. Mine came w/ a blood pressure drop, light-headedness & breathlessness that didn’t recover as it should have for my fitness level. I determined it was related to my vagus nerve being irritated by my styloid(s). A hoarse/weak voice/vocal loss is also related to vagus nerve irritation by the styloids where ES is the diagnosis. Swallowing issues is also a very common ES symptom.
First, to answer your major question, the CT w/ & w/o contrast of the area between skull base & hyoid bone is your best diagnostic test as it should clearly show the situation with your styloids, stylohyoid ligaments, hyoid & the internal carotid arteries & internal jugular veins in your neck. Vascular compression, if present, should be visible. Please request that 3D images be included on the CD you get of your scans. That will save you time in not having to convert the images to 3D so you can better see what’s going on in your neck & you can post anything you have a question about here so we can offer our non-medical but somewhat experienced opinions.
I don’t blame you for not wanting an MRI w/ contrast, & you may not need to go that route if the CT scan shows what I think it will. I had an MRV w/ contrast looking for vascular compression & had a headache for a week afterwards so I sympathize. Not only that but the radiologist who read mine said there was no compression when it turns out there was bilaterally. Go figure…
Vein/artery “floppiness”, POTS, & MCAS have been found to be related to hEDS. The torn labrum & knee cartilage can also be related to hEDS, since, as you know, that causes tendon/ligament laxity which can dispose an athlete to having joint injuries more easily.
Intermittent pain is a trademark of ES as symptoms tend to come & stay for a while then can disappear partially or completely & not recur for weeks or months. Thus, I find your intermittent L neck pain in line w/ that aspect of ES. The quality of the pain you get is typical of the forms nerve pain can take. The catching feeling could be your styloid/calcified s-h ligament catching on soft tissue in your neck then releasing w/ head/neck movement.
Eye watering is related to irritation of the facial nerve. Dry or extra watery eyes are symptoms we see w/ ES. Dizziness & brain fog tend to go hand in hand w/ vascular compression of either the internal carotid artery or the internal jugular vein thus the need for a CT w/ contrast to look for those situations.
Should further testing beyond the CT scan be suggested, it’s critical that you let the doctor who’s referring you know about your genetic mutation as that may make a difference in what type of testing is recommended or how it’s done.
Here are a couple of links to posts @Jules wrote that will help you better understand how your symptoms could be connected to ES: