Hello everybody.
and happy yule tide x mas bon noel felice navidad …
A little while ago I joined this forum and was overwhelmed with the amount of information and tragedies, so I kept quiet read and learned.
I was diagnosed with ES in 2006, after 4 years of sometimes insulting treatment by various doctors. After 4 years my styloid had grown enough that doctors could palpate it and i was referred to the local university hospital.
There the doctor in training had to get her supervisor who said: “oh thats ES, do you mind if for teaching purposes, we get the other students to poke around in your mouth?”
Of course I agreed, in the hope that some people might be spared the treatment I had endured.
He then offered ," well if you want to find out if this has anything to do with your symptoms, I could shorten it a bit for you intraorally." Quickly a date was set, more docs in training came by to poke around in my mouth pre op. I felt like a celebrity.
HEHE and only since joining this forum I became aware of how risky this operation was.
For 17 Years that ear was free of tinnitus. For me it was a minor operation.
3 Years after the operation my face started to twitch and I developed tinnitus on the other ear.
So obviously I concluded ES in the other ear and went back to the university clinic ->I was treated like a demented idiot (that doctor had left). They did not even do a ct scan, but tried to convinced me that its all psychosomatic.
So over the years more illnesses were found and treated, but nothing ever resolved everything.
How do you explain this to everyone around you? I withdrew into a nutshell.
I stopped talking about how I feel. I stopped seeing doctors as long as possible, just to avoid that look of “you hypochondriac, there’s nothing to be found”.
A bit over a year ago I started to cough, became really hoarse, hardly could breath, had the feeling of asphyxiating, made breathing noises like a jackhammer, mouth burning dry thus insomnia…Medication (budesonide) didn*t work, was increased to 6x normal dose, didn’t work. It was too painful to continue smoking. So I focussed on the withdrawal and breathing by biking all the time, and hopefully sleeping again, but my voice keeps disappearing.
Acupuncture keeps getting it back.
So with all the sports and all the eating from nicotene withdrawal I decided to work out properly and mobilise my painful neck and shoulders as well.
Weirdly enough trying to mobilise my neck and shoulders made me feel so much worse, until bling, I remembered those styloids.
My phoniatrician sent me for a ct scan. She has been monitoring my cyst in my throat (end of the tongue)and my vocal cord edema for the last 2 years just in case something might turn malign.
So here I present my native ct scans
Native because of course I am allergic to iodine.
and here the removed bit
I’d be pleased about any kind of feedback on my scans, as in the native scans i can’t judge if any nerves, veins or arteries might be implicated and I am really scared of being put off again like an idiot and left hopeless again.
