I know of a very good man, a neurosurgeon in Germany, who helped me to find out what was wrong but I will not advertise his name over the internet without his permission, I’ll send you a private message of his details. He’s very interested in craniocervical instability and cranial dislocation and has written papers on it, he may know of someone closer to you who can help you.
I know what you mean about the foam cervical collars, they do not support the head really at all and therefore it’s allowed to slide backwards and forwards. The short time that I wore one actually made my symptoms worse.
Why and how couldn’t you breathe, was it just the loss of autonomic breathing response, was it swollen throat, throat closure or something else ?
When you have become paralysed before, was it always discovered upon waking – I have a theory for this. Were there any sensory changes or was it just muscular inability?
It’s funny that they said it was all in your head because quite frankly, I think it is all to do with your brainstem being compromised and, as we know, the brainstem lives in your head!
I know your legs are shaky but I think it’s best to still keep using them in any way you can. You might want to discuss this with the Syringomyelia guy. It would be dangerous to ask you to stand up but you can always find other ways of exercising them, as much as possible (it’s ‘use it or lose it’ I’m afraid).
My right leg started de-nerving way back in 2004, it hurt a lot, was weak and when I stood it felt like standing on broken glass, worse under the ‘instep’. I could manage to walk, in a fashion, on the outer edge of my foot, with the aid of a stick to help support and balance me but only for short distances, as the pain would soon come on. I bought one of those pedal machines you can use sitting on any seat and, even though I couldn’t pedal forwards, I strapped both feet into the pedals and pedalled backwards, which was much easier, the good leg provided the power and at the same time the bad leg got exercised! I also propped all of the doors open in my house and pushed myself in and out of the rooms backwards on an office chair (it’s very difficult to pull forwards but it’s easy to push backwards). I have full normal sensation back in my leg now and can use it virtually as normal (just a slight drag when I try and walk).
In the natural state of a healthy spine, the cervical spine has a lordotic curvature, a ‘C’ shaped curvature. Those with hypermobility type of EDS, or those who have had trauma lose this formation to some degree, it is referred to as ‘loss of lordosis’. For me, the Philadelphia collar helped restore this over time, through wearing it 24/7 as I have noticed on my radiology. I don’t have hypermobility though, only very slightly in my knees. For those with hypermobility, you need to be doing your best to help your body deal with better production of collagen, a process which requires regular Vitamin C throughout the day. I break up an effervescent Vitamin C tablet and dissolve this in water at each meal time, it helps aid digestion too, for those of us who have gut issues.
Hope some of this helps, or gives you hope, I understand you being overwhelmed. I find it easier to list the parts of my body NOT affected, it’s easy, my sinuses and my tongue (end of list!).
Hang on in there my friend, we have to fight this condition a little at a time, many little bits add up to one big bit!
Barbara
(UK)