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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

I'm in the UK and from personal and shared experience, when the ablation works it's cracking, when it fails it's time to give up and find something else.

Here it is done once, then at 3 weeks, then 3 months then at 6 month intervals. I missed my 6 month surgery as they refused to do it since I had the flu, they rescheduled me in and due to waiting lists that was three months further down the line. The nine month gap caused it to fail, I then tried to restart the schedule and it didn't work at all. I don't think anyone knows why including the medical profession. When it did work it was remarkable, I wasn't pain free but the pain was much more localised to left side and I found out things like what a full bladder feels like, as at some point during the last 16 years I'd gradually lost sensation and so only knew to go if my legs hurt more. I don't think ablation is a great cure but a useful stop gap. I've avoided a stimulator for the last 4 years, but in January am going to an assessment appointment. There's a new sensor being rolled out across the UK calles RestoreSensor that seems to be better that the older ones as it has an accelerometer in it so can be adjusted to give differing impulse depending on whether you are upright or lying down.

From what I understand about SCS's in general though, they have a battery life of 5~7 years and yet I haven't met anyone that has been able to tolerate one for more than 2 years. They, like ablation, seem to have internal scarring issues, and one woman over at the australian CRPS forums has had a second one, but can't turn it on because it hurts her more. Currently I am focussed on trying to get my quality of life better after having a failed lidocaine infusion and the fallout from having my medication switch (predicated withdrawal and side effects from having other things prescribed).

I'm also researching CRPS II because it was only on Friday that my doctor admitted that I had the damn condition and that it is incurable. I've suspected for a long time that I have it, I'm also sure four years ago that a different consultant knew exactly what I had, but the UK healthcare system is funded on results with the exception of cancers or palliative care, so declaring someone incurable is not in the best interests of the doctors or treatment programs available.

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