I'm sorry that you are having these problems. May I ask what you were seeking from the professor you saw that he wouldn't do? Is there anything we can do to help with information or references that might help you change his mind?

Hi all how is this RSD diagnosed? I have been told by a consultant he thinks i have this condition.

Dear Professor

It hasn't reached the elbow yet and has stopped spreading at least for the moment so it is still possible to carry out the operation but as I said to you the amputation may be unnecessary but the only way to find out would be to arrange for it on a Friday but bring me in the previous Sunday and start a continuous full sympathetic nerve block then. We take pictures of the hand on the Sunday then compare them to my hand on the Thursday, now if there are significant signs of reduction the op is canceled and I am kept on the block until 48hrs after all signs have disappeared, if not then you operate the next day. It appears that I am not be the only one who believes this may be a cure, a couple of weeks after the appointment I read an article from the University of Washington that stated they were looking to start a study on the use of Full Sympathetic Nerve Blocks in the Treatment of RSD sufferers and the possibility of it being a cure. Now I have no idea how long it takes to get funding get permission do the trials, analyze the data and produce a paper but I would guess a couple of years and the chances of me going that long without another spread are slim.

If we don't do this I don't have much of a future, I have read of 2 UK sufferers and a number of US ones who reported that once the RSD completely encircled the limb it restricted the blood flow so severely that they developed gangrene and had to have amputation's to save their lives. Even if it doesn't get that bad 10% of us go full body, that is all 4 limbs, torso, neck, head, eyes, mouth and internal organs. or I could just end up as bad as some you will see in the video below.

If we do and the Full Sympathetic Nerve blocks work as I hope then it should disappear from my legs as well and I will eventually be able to return to a full working life, you will have found the cure I don't now if you would be interested in trying to get funding to run a proper trial but at least I could put it on the internet for other sufferers to ask their doctors to try. if they don't and we have to amputate I accept that despite the 100% claim from the Americans nothing can be certain but even if it was 50-50 it still better than the 0% chance I have now. If it goes wrong it could cause it to spread but that is going to happen anyway, first spread was caused by the use of a sensitivity pin 4 ins outside the affected area the second by my grandson treading on my toes so the chances of it not happening again are virtually zero. Things could go wrong and I could die on the table, I would give you a disclaimer saying you could not be held to blame, but considering the first 2 if we don't and the fact that according to one American source in the long term 25% commit suicide that's the second best thing. If it works and there is no phantom limb pain and no spread then you have a means to share with your colleagues of preventing Phantom Limb Pain in any future amputees and any RSD sufferers will be able to have any operation without risk of this condition spreading or starting up at the incision site, some have had it start in their mouths from having a tooth pulled.

The chance of helping thousands of people even though they will never know my name makes this worth the risk to me.

Kevscar

I have agonised all day about how to reply to your post. You are clearly having a hard time and have no faith left in the medical profession.

I understand that lack of faith - I have virtually nothing good to say about the medical treatment of my CRPS. The doctors have been ill informed and arrogant which they have compounded with total indifference. I had a very different experience when I went abroad to see real experts in the condition (not in the USA) and if nothing else, they confirmed that all of my research and knowledge about my own condition was correct and my doctors were wrong. It didn't help in terms of treatment options but I knew I had exhausted everything I could try and everything I was prepared to try after looking at the clinical trial evidence on risk versus reward.

The clinical trials that have looked at amputation already have not produced sufficiently favourable results. It has been rejected by western european and north american countries as an effective or acceptable treatment for CRPS. I am sorry, I don't know what you mean by the term "full sympathetic block". However, amputation is already carried out using continuous epidural anaesthetic via an indwelling intrathecal catheter for a period both before and after the amputation itself is done to minimise pain control issues such as CRPS, phantom limb pain and stump pain later.

Continuous epidural pain relief is also currently used to try and treat patients with CRPS. It is done in an inpatient setting, the intrathecal catheter is put in place and left there for a period of time. How long tends to depend on the individual specialist and the ability of the patient not to develop infection etc. the pain relief is given continuously in an effort to break the pain cycle and to allow the patient to do physiotherapy to try and regain movement and function whilst in a pain free state. Your ability to obtain such a treatment in the UK would depend entirely on where you are, the Pain Clinic you attend and the specialist you see. Some are more progressive and interventionist, some really won't go beyond fairly the basic and routine options.

In the UK today, amputation for CRPS affected limbs is permitted to be carried out where infection and subsequent tissue breakdown that is resistant to treatment necessitates an amputation, ie to save further limb loss and/or a patient's life. That means it won't be done as a preventative measure before such severe tissue damage occurs and definitely not in the hope that it will treat the pain. Any surgeon found doing it for those reasons would be open to disciplinary action. They wouldn't be following the relatively newly published UK treatment guidance for CRPS (which is assume you have already looked at?).

I know quite a lot about clinical trials and funding and i am sorry to say that I honestly don't think that your proposition is likely to have a chance of success with either the professor you sent it to or any funding body. The system in the UK and Europe just doesn't work that way.

I am sorry for sounding so negative and doom-laden but the alternative was that I either didn't reply to your post or I just posted sympathetic platitudes which isn't my style. Neither of these options felt honest when you had shared your information. I think you need to try and gather up your remaining energy and look at all the non-amputation pain management alternatives you can. It may help if you can go to your doctor with details of anything you think may help and take copies of the reported clinical trials or case studies rather than anecdotal references. Some pain specialists just won't depart from very conservative approaches though so you may need to think about seeking a referral to someone else or going privately. In the UK your options are fairly limited because true CRPS specialists are virtually non-existent.

Whatever you do, don't just give up on all medical intervention. It still pays to have a decent relationship with relevant doctors just in case your situation changes or the treatment options they can give you change. Have a look at both the Dutch and UK treatment guidelines if you've not done it in case there is something in there you that you find helpful. Sorry if this post hasn't been helpful.

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.