I am sorry but you are wrong about european views on amputation or at least the Dutch who are the leading c0untry on this. Delassions paper stated that 73% of upper limb amputtess and 67% of lower were plaesed with the result and this was higher were the amputation was elective., The Dutch 2006 guidelines say amputation can be considered. I have read 6 Posts by US RSD sufferers who had the amputation done under fll sympathetic nerve blocks, all tate no phantom limb pain, n rsd symptoms left and 2 had got artificial limbs and returned to work.

PS the UK guidelines are seriously inaccurate and full of important omssions, so bad I have not only e-mailed the facts to the Royal College of Physcians but to the Times in the Hope they will do a story on it.
Even our top Professor McCabe is at least 12 years behind the rest of the world. 1 UK sufferer phoned Bath because she had to have an op and was told that it was virtually certain she would get spreads from it.
The first US paper saying the use of pre-emptive analgesics would prevent spreads during operations was published in 2000 and there have been a number of others since.
The first paper published saying Guanethedine blocks were useless for RSD sufferers was published in the US in 1993, the first UK one those guidelines published May this year.

Kevscar

I am sorry, you sound angry and frustrated and if i have made that worse then i didnt mean to. I dont think you intended me to be the focus of your anger but if you do then I wont continue to post on your thread.

To be clear, I didn't say I agreed with the UK guidelines or that I thought they were good. However, the unfortunate problem is that they have been introduced in the UK, warts, errors and all. I mentioned it because i have no idea what other rehab and treatment options you have had - i dont know anything about your history so it was only a suggestion in case it helped in some way for you to find treatment options that are more realistic in the UK. I also don't disagree with you that the UK is many, many years behind other countries in its understanding and treatment of CRPS.

Patrick Dielissen's study from 1995 expressly concluded that for patients with severe chronic RSD, amputations should not be performed because of pain alone. That is what I said in my post.

Ms McCabe is a only nurse specialist who did a phd so there would be no point in contacting her regarding the kind of intervention you were hoping for. Her research areas are largely focused on the likes of sensory issues, mirror therapy, perpetuation of pain in CRPS and the likes. The team at Bath are strongly against surgical intervention for CRPS. Their focus is almost exclusively on pain management and functional rehab using motor imagery, physiotherapy, occupational therapy, psychology and other fairly conservative forms of functional rehabilitation. I think their claim to be a specialist centre is laughable and that is from my direct, first hand experience, not other people's views.

Unfortunately, anecdotal evidence from a few people posting on the Internet who say they are happy with something isn't going to be enough to influence the medical profession in the UK to give you the treatment option you'd like. We live in a world where evidence based medicine is the only acceptable kind. That evidence base has to come up to certain standards too.

There are many medical treatments given in the US that are not provided in the UK, largely because their system relies on payment at the point of treatment. This results in very different protocols for medical procedures. It often seems frustrating but it is often impossible to persuade clinicians here that they way they do things in the USA is either necessary or financially viable in the UK. Again, frustrating when you have CRPS and want to try things that are not available here but something you are likely to have to come to accept and make peace with unless you can afford to travel and pay yourself. I've had to go through that process of coming to terms with the limited options here and it's not easy.

I am not angry at you but at the ignorance, incompetence and attitude of the Uk specialists. I have been treated by or spoken face to face with 7 of them. Not one had ever heard of let alone read any of the American and Dutch papers I spoke of and only one asked for the links to bring himself uptodate and considering some of them were 10 years old thats appalling. Dr Shenker at Addenbrookes sent me to their PSSU without telling them my condition or how I needed to be Handled result 6 days later in the Acute Care ward of another Hospital with an infection upto my shoulder and 6 or 7 DVT's in the arm. He also tried to raise funds for me to go to germany for the 5 day Ketamine Coma at least 18 months after they banned it because some people hadn,t come out of the coma and at least one death. The last one summed up their attitude, "I'm only interested in whats happening in the UK"

I'm glad that you aren't angry with me.

I agree that there is a gross lack of even basic knowledge about CRPS amongst those in the UK who would regard themselves as the "experts". It is astonishing but, sadly, also my experience, that in the whole of the UK, there is nobody who has up to date, accurate or comprehensive knowledge of the condition. The total apathy and complete lack of interest is even worse.

It is a situation that made me very frustrated and also angry for a long time, especially after going abroad to see genuine experts with the very latest research information and an active interest in the condition. However, going abroad gave at least me the vindication that I was right all along about my condition and the particular symptom profile I have. It also confirmed that I had already tried all of the possible therapies available in the UK. Finally, it confirmed what I believed I already knew, namely that there is actually nothing else available even outside of the UK that could help with my particular CRPS symptom profile.

The frustration and anger only serves to increase the pain and severity of my symptoms so I have largely learned to let it go. That way I can better manage my condition day to day. I don't know what the answer is for you. If you are determined to campaign for better knowledge and treatment, I hope you are able to find a way to energise yourself whilst shedding the anger since that, more than anything else, will increase the severity of your symptoms and make life feel so much more hopeless.