Hi,

Firstly, thanks so much Mike for that information - it is very interesting and given me a bit more insight into the underlying neuroscience of CRPS... I was wondering whether we could move your message on to here so that we can perhaps make a clearer link for people to discuss the potential of DBS.

I know 4 people who have severe RSD and dystonia who have undergone implantation of electrodes and had the DBS. One person made a phenomenal recovery - after 5 years of not being able to move her legs or hips and a year stuck in hospital after her entire body locked her flat in spasm with her arms twisted up to her shoulders she had the DBS implanted. It has reduced the pain and, although she is not yet walking, she has complete use of her arms and hands (after coming round from the operation she could use both arms for the first time in over a year, and her left hand the first time in 4 years) and quality of life has improved 1000x as her mobility. She had electrodes implanted for dystonia and for pain (two different areas of the brain were thus being stimulated).

Another girl I know who also has severe RSD/ Dystonia and had been completely paralysed for 4 years (including her face and jaw, leaving her requiring a G feed). She had the DBS with electrodes for dystonia and pain and it has reduced her pain quite significantly, loosened her muscles up and she can now eat, hold her head up independently and is starting to be able to turn her head. She is also now getting some degree of control over her muscles - it is now possible to feel the muscles twitching when she tries to move rather than the complete paralysis which was present before.

I know several more case studies of people who have had the DBS but all of them have experienced some benefit in both pain and mobility from the treatment.

Has anyone on here had the DBS? I don't think it's being used in the US yet for RSD but.. any information would be great, especially as it may be one of the few potential "drug free" treatments which targets the area in which are brains are wired incorrectly (over simplification, I know!). The research Mike posted also shows an identifiable, organic basis for electrode placement.

TMS (Transmagnetic Stimuliation) is a handheld non invasive version of the DBS and I know that it has been used in studies on RSD in both the US and the UK with some success.

I just thought it might be interesting to know whether this is being offered in the US and if anyone else has experiences or thoughts about it.

Thanks and pain free hugs etc to you all

Rosie xxxx