Hi Barbara,
Bad Wildungen isn’t as far away as I thought at first. It’s about 160km/99.42 miles away from me according to Google Maps. I live near Cologne. Why do you ask, is there any doctor who knows more about it?
I got the diagnosis “Zervikalsyndrom” (“cervical syndrome”) from my orthopedist after I told him how loose it is and I that I often need to get vertebraes relocated by osteopath and it pops a lot and so on. He gave me a foam collar (didn’t help) and told me I should only wear it when driving in a car. A this time I already walked funny but I didn’t have a bad paralysis.
Some weeks later I couldn’t breathe (happened before) again and so my Mum drove me to ER where I wasn’t able to walk anmore and had to drive my in with a wheelchair. I had tachycardia and high blood pressure and fainted again. They gave me prednisone and as it didn’t helpon artificial respiration.
After I woke up again I couldn’t move any part of my body besides my head (I had this multiple times before) and my ability to move my arms came back later. But this time the ability to walk didn’t come back. My legs are shaky, if I try to put weight on them and I fall down.
But they weren’t able to find anything and told me it’s all in my head.
But we didn’t agree and showed MRI pics to another radiologist who found Syringomyelia. So we send those pictures to one of the leading Syringomyelie experts in Germany and he diagnosed me with blocked CSF flow and Syringomyelia and that my cervical spine is missing it’s bending and looks like I had a whiplash.
And there’s nothing I can do, I have to accept it.
That’s everything that happened about my cervical spine till now, nobody looked at my odontoid or brainstem.
And I wasn’t able to find a doctor who wants to look any further.
Cool, isn’t it?
I bought the Philadelphia collar on my own to see, if it helps me as the foam thing is crap. It’s better but I’m still not able to walk most of the days.
I don’t rememer having an accident to my cervical spine, maye it’s just EDS or the doctors pulling to hard on me in ER?
Sorry for this long text. I hope you are able to understand everything as it may be a bit complicated.
And I would be lucky, of it only were my cervical spine. But it’s also my hands, shoulders, feet, jaw, eyes, ears, sinusses, stomach, bowel, lungs, kidneys, allergies and so on. And some of it still isn’t clarified and sometimes everything is just too overwheming for me.
But that’s a normal EDS life I guess. 😀
Samuel
EDIT: As treatment for this I have physical therpy where they do isometric muscle training for my legs and arms.