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!
I know its oddtp reply so long after this message…ive just seen you wrote ‘its common’ to have accesory nerve affected…what would the symptoms be? I didnt realise its quite common…im super struggling xx
Compression or irritation of the accessory nerve can cause arm and shoulder pain and weakness too; it innervates the SCM muscle and the trapezius so can cause difficulty turning the head too.
@jules i have pain in my traps/scspula area thats evil psin or numb stiff. This goes to my shoulder. My scm muscle has been awful since dsy one. Either numb or electric pain. Ivd been trying to find others but mainly just share the more trypical esgles symptoms. Whdn i saw you writd fairly common i felt excited! Im beyond fed up jules. My gp has sent me to eye nero…july!! My appointment to discuss eagles is also july. My eyes were wonderful the weekend now back to evil…its so either ok or absolutely awful. Xx
@JoJomoo - Your neck & shoulder symptoms could most certainly be caused by an irritated accessory nerve as @Jules mentioned. It’s not uncommon for ES symptoms to come & go & come back again, sometimes stronger. It’s good you had relief from your eye symptoms over the weekend but I’m sorry they’ve come back today. If you can figure out a trigger that you can avoid, that could help reduce the eye symptoms. Sometimes it’s as simple as a certain head position. Stress can also ramp symptoms up. If you’re relaxed on the weekend but stressed during the week, you may want to look at ways to reduce your weekday stress. There have been conversations on our forum about deep breathing exercises or ways of meditating that have helped some of our members. I’m certain there are quite a number of YouTube videos regarding relaxation that might be helpful.
I’m sorry your appointments are in July, but I’m glad you have them booked.
Hi @jules@Isaiah_40_31 hope you are both well.
May i ask, when seekng a dr to gain disgnosis do they always press on the styloids? And what if it doesn’t hurt?? Does this mean it’s not eagles just from this? Many thanks
Not all doctors do this, it’s not generally used as a diagnostic tool I don’t think but can help to know though. Quite a few members can feel the styloids themselves through the mouth near the tonsils to see if that causes pain/ worsening symptoms…A junior doctor spotted the styloids in a panoramic x-ray for me, & called a consultant in- he felt the styloids through the neck, it wasn’t hugely painful but luckily he didn’t rely on that, especially as the symptoms came on way worse on the journey home!
So not sure that I’d say it’s definitely not ES if it doesn’t hurt… This probably isn’t very helpful, have your tried poking yours?!
Hi @Jules
Thats strange you wrote yours hurt on your journey home…so did mine…it set off all kinds of horrid symptoms but it did not hurt when he did it. Everyone who has seen my pano has said my styliods are elongated but i also know thats not always the answer. July seems so far away.
Time usually flies by when you’re enjoying yourself, waiting for hospital appointments goes so slowly…what support have you got at home while you wait? And is it possible to ask to be put on cancellation lists for your appointments? Sometimes you can get in quicker that way if you’re able to be flexible?
Hi @Jules
I have a small family. My mum and brother try their best. Ive gone an odd route…im seeing neuro. It was a neuro who suggested eagles. Ive not seen ent. I also have hideous bad back (l5/s1) and awful shoulder/reap/arm pain but im sure thats my accessory nerve…its such a nervey pain! Twitchy! I try so hard to have a positive attitude but pain gets you and fear…im so scared of not finding a good dr and help. The constant feeling of something in your throat, neck numbness and eyes veing blurry is so scary. I read others symptoms here snd on FB and just het comfort (although sad for them) that my sysymptoms seem common! Im so grateful to you all.
@JoJomoo - I also have L5-S1 back problems (disc bulge). Last year in July, I had a cortisone injection, done under a fluoroscope for accuracy on each side of the joint. Within a few days I was virtually pain free. Some of my pain is slowly coming back, but it’s been 10 mos since the injections, so I’m quite thrilled to have gotten such a long spell without the terrible pain.
I can’t remember all your situation, I’m sorry, is it possible to be getting a referral in for ES to see Mr Hughes on the NHS in London in the meantime too?
I’m glad you at least have your mum & brother about
This probably isn’t very helpful, have your tried poking yours?!