The following must be sang to the music of back street boys…oh my god im back again!!!
So grateful for all your help everyone. I have more questions…so sorry! Does Es cause sensory overload? As in sounds are too much ? And also if an mri was taken to see the trigeminal nerve would this scan also show other cranial nerves? Did anyone here have any accesory nerve symptom? As well as my facial numbness and visual symptoms and ny very distressing throat issues i also have electric ear pain and electric sternocleidomastoid and trapezius numbness/electric. Im so grateful to you all. You literally give us all so much invaluable advice.
There is a specialized MRI scan called a neurogram which may need to be done using a FIESTA MRI machine. There are not very many of these in existence so they can be hard to find & get a referral for a scan. I expect if you were able to get referred for one of these scans, it would show all the nerves in the area of the neck that’s scanned, but you’d have to ask the technician or referring doctor to be sure.
The symptoms you’re describing in your face & eyes & ear could be attributed to your facial & trigeminal nerves. Throat is likely glossopharyngeal but could also be vagus & the SCM & trapezius pain is most likely from your accessory nerve. I had terrible pain in my collar bones, traps, & neck which all resolved when my styloids were shortened. Pain in my face ears & left eye also went away.
FIESTA is the name for specific sequence used on some General Electric MRI scanners. Other manufacturers’ (incl. Philips, Siemens) machines have similar sequences called different names.
The machines capable of performing this sequence aren’t rare, but it’s true that not every scanner can do it.
We’ve certainly had members with hyperausis- sensitivity to sounds- so it can be an ES symptom; it’s also linked to tinnitus which seems quite common with ES, & Menieres disease which again a few members have had alongside ES. The spinal accessory nerve is quite commonly affected with ES as well, and the trigemninal nerve & facial nerves too, they both have similar pathways.
I’m not sure how easy it is to get a FIESTA MRI in the UK…
What is the uk gold standard test for eagles? I have a ct with contrast booked in for May 11th. This truly is miserable. I miss me. I was told i have thoracic outlet syndrome i cant see how they are not connected…im just electric or numb on my left side.
A CT with contrast is the gold standard test for ES in every country, I believe. TOS is also a disease w/ vascular compression & it does seem that some people who have IJV compression near the skull base also have compressions lower in the body. Whether it’s from something like EDS or other hypermobility issues is unclear, but those certainly could be causes.
I’m glad that you have a CT with contrast booked, if you can get a copy of the images I’d suggest that & so you have them if you want to be referred to someone, sometimes they can go astray!