Hiya

I normally post on the RSD forum. I have RSD (Reflex Sympathetic Dystrophy), Dystonia and other random muscle/ nerve issues (and being english the drs gave me the choice of staring treatment or spending the next 2 years waiting for the correct scans to give a "correct" name to what on earth is going on. (The neuro diagnosis switches... MD, MS, random other stuff)

I've gone from being a trouble free 16 year old who loved sport and music and who dreamed of being a doctor, to being a wheelchair user. Over the last 5 years I have lost alot of movement and now require 24 hour care. My neck muscles are very weak and have been for the last 18 months. I have an otto bock headrest on my wheelchairs (the deep one that stops all rotation) and am only in my wheelchair with tilt etc on.

I have used a neck brace regularly during the last 18 months - I try and wear it only when "necessary" (travelling/ some transfers/ bad days). I have progressed from a soft basic foam collar, a plastic reinforced ring one, to an A and E halo splint, to a Philidelphia, to a Miami J. I intermingle all of these but many of them don't work anymore and the phillie and the miami have given me pressure sores....

Does anyone have any advice about appropriate collars? I was thinking about getting a headmaster but I'm not sure!

any help would be VERY appreciated!

Thanks

Froggsy xxxxxxxxxxxxx