heya - thanks for your responses!!! It's really useful getting other people's views on this.

Firstly, Jo - now... if I could get Prince William on the case!!! (he is SO cute... definetly my favourite out of the two!)..

Tayla/ Mike.. my concerns about the DBS with the RSD is the healing - as RSD causes swelling/ skin problems etc I was worrying about the risk of swelling of the brain after having the op done. I was also worrying about the chances of the incision healing due to my RSD - I have ulcers and sores from the RSD and small cuts take months to heal - I have a small graze on my knuckle which has been there for months and is still barely healed just because the blood supply to my skin from the RSD is so bad. I just don't want an open skull wound!!! Friends of mine who have had SCS's implanted have had unhealed surgery site for years afterwards etc. Also, as I have pretty severe RSD the chance of me getting infections is a lot higher than the general population. If it was just the dystonia I was having then the operation would be pretty much a no brainer.. (LOL). stupid RSD!

Dear Roz - thanks for the sites! I have looked through them briefly but haven't been up to a long proper reading thing though. I do agree that there are many routes to RSD and I also believe that this is what leads to the differences between severity, different treatment options needed and possible length of time of symptoms. I hope that one day the drs will understand enough to be able to seperate the types and then be able to treat them! that would be so awesome!. Many of the drs I have been under thought that I had MS because of my symptoms - apart from the colour changes etc.. but my MRI's are almost clear (there are some changes but whether that's RSD or whatever... the dr's just gave up - they haven't got the funding to do proper tests.. The current neurologist I am under told me I had a choice. Either spend a couple of years trying to decide what is "properly" wrong with me - through tests (2 year waits for many of them!) or to try and get the symptoms under control and then see. I chose the symptom treatment option because I was at a point where I couldn't handle my life with the level of symptoms I was experiencing. I do agree that there is more than RSD going on and that RSD is probaly linked to another condition that hasn't been recognised yet... I really hope your blood tests show up if there is anything else going on with you and the RSD. I also get lots of inflammation. I was on antibiotics for my ulcers but we have since started treating them topically with hydrogen peroxide and iodine because I cannot tolerate high levels of antibiotics without feeling pretty dreadful - but I suppose most people are like that. I don't think with me it can be lyme disease - as I have not spent time in that part of the US - I have spent alot of time in LA but otherwise have been in the UK/ Berne/ Lyon/ Geneva... I guess the inflammation risk is a reason that the op scares me so - I do NOT Want my brain becoming inflamed, especially as even tiny "surgeries" can put me in agony for weeks - my last EMG was 8 months ago and I lost most of the remaining use of my arms straight afterwards - all I remember is sitting in the office in hysterics, passing out and then coming round and being unable to use them, and all that from a needle! (sorry, have just realised how much of this email is just rambles!).

Artist - wow, a brain smeared in vitamin E cream - that could be really cool! it would moisturise my brain!. If I get it done I think I will insist on blocks or ketamine administered throughout the surgery if possible as I feel it's the only way I'll tolerate it and hopefully not flare afterwards. My biggest fear with this is that if I have it done then I will lose the quality of life it has taken me so long to get.

Thanks so much everyone - I know I'm going on about it - but it's just you are the only group of "RSDers" who can relate to me about the fears with the RSD - and most of you are far better researchers than I will ever be!!!! Thanks for letting me moan and thanks for all your help!!

Love and Hugs

The dead frog xxxxxxxxxxxxxxxxxxxx