Thanks for accepting me here. I’m very grateful to have this community to help.
I’m 40, 5’2 (not too sure if that relevant but maybe?) and been struggling for over 20 years!
Id like to start by listing off my issues and symptoms:
For as long as i can remember, i’ve always grinded my teeth. Ive been given mouth guards which I chew through. Cant have botox as my local hospital doesn’t offer this on the NHS now and i cant afford to pay private for it. I get a lot of jaw pain and it often feels quite loose and unstable in the mornings… like it could pop out of place!
My jaw locked a few times last year. Very scary and extremely painful! Took 12 months to see a Maxilliofacial Surgeon. I told him quite a few dentists have told me i have TMJ. Lots of clicking and unpleasant jaw sensations. He examined my orally and also around my neck and jaw. Said my TMJ wasnt as bad as it seems and to try a different night guard. One worn between the front teeth. Again (as with the Botox) completely out of my price range so thats been shelved for now. I am gutted as i feel a guard at the front of my teeth would help.
He discharged me back to my dentist. I mentioned ES to him and he dismissed it very quickly and said its very unlikely i had it. This was a very quick 10 mins exam/consultation with no follow up imaging. Pretty disappointing as id waited a long time to see him.
I wanted to ad my TMJ history as i have read that ES and TMJ seem to have a lot of crossover symptoms.
For over a year ive also had let sided shoulder, arm and hand/finger complaints. My left shoulder often feels quite tight. My GP said it was rotator cuff injury yet i had actually injured it. I also don’t perform an repetitive movements that could aggravate it. I left the GP a little confused but was told to follow up with some at home exercises and come back if it didn’t resolve. I was then finally referred to physio (yet to get an appointment).
My left arm often goes numb, especially upon waking in the morning. I dont sleep in a way to cause that so unsure why its happening. My left hand and fingers often get pins and needles and feel weak.
Im currently under a vascular surgeon (for issues unrelated to ES) and expressed my concern for thoracic outlet syndrome given my arm and should complaints. He performed some tests in his office. Arms above head, felt for cervical ribs, checked arm pulses etc and said unlikely TOS.
Fast forward to now. All of what i’ve mentioned above are still going on. I have good and bad days.
I finally saw my GP (again!) who referred me to neurology for awful headaches along with neck and behind the ear pain. Always left sided. My neck is so tight on the left that my range of motion is poor. If i try to fully look over my left shoulder it feels like something will snap in the back of my neck.
My neurologist suspected migraines from my symptoms. Even tho i felt i didn’t present with the typical migraine symptoms. I don’t get nausea, i don’t have an aversion to light. I literally just have pain left sided from my neck, around to the back of my left ear (where the bony part is in the skull) all the way over the left side of my head. Its awful.
Thankfully my MRI has come back as normal so nothing terrifying there. Still no further with my answers.
My neurologist wants to try some occipital nerve injections in hope to relieve my headaches. I’ve not followed up with him yet since my MRI.
Other symptoms i have:
Thumping and whooshing in my left ear. Often when i lay down on that side. I can feel and hear my heart beating.
Tinnitus which can get quite extreme and often muffles to very brief hearing loss, im talking a few seconds. I can only describe it as my hearing just fading out. Silent, then it fades back in. Very loud noises cause this such as police sirens etc.
When i swallow i get a weird sensation in my throat. The only happens if my head is turned or tilted in a certain way. Its not painful but i can sometimes feel clicking or catching in my throat.
I have noticed on a few occasions i will get a tingly electric sensation in my left cheek. Like pinpricks lightly stabbing my skin. It goes away as quick as it comes. Lasts no longer than 5 mins.
So after finding out about ES i managed to obtain an old panoramic dental xray from 2015.
I would love to know what you all think of the image. I can see both styloids. They ‘look’ slightly elongated, angled and pretty sharp. Compared to other images of ES mine doesn’t seem extreme. But maybe its enough to cause some of the issues ive been having for such a long time?
Im going to send this to the neuros secretary with a write up of these symptoms. Im hoping he can order a CT as the next step.
Sorry for some reason i cant upload an image… please bare with