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.