I was thinking also.. what if the amputation just triggered more of the RSD or caused it to spread?

I think that is why it is not considered, I know many have mentioned they wished the affected RSD body part was gone, but I have not read of anyone trying it at all.

Sorry to hear that you are pushed to this state with this disease. I can totally identify. I personally requested that my left leg be amputated above the knee as my RSD is from above the knee and down to the ankle. I requested this of both a neurosurgeon and a pain specialist. Both told me that an amputation will not work to relieve the pain as the diseased nerve areas are actually tracked far above the area that it innervates (thus the attempt at sympathetic blocks in your back used for your leg.) This is why they reserve a sympathectomy as a last resort option, which is essentially removing the entire nerve segment much further up. I am told that the likely outcome of an amputation in RSD would be "phantom pain" resembling the exact symptoms that you have with RSD even though the leg isn't physically present. Amputees frequently experience leg pain after amputation due to the fact that the nerves don't recognize that the leg is no longer physically present (and something that you may want to research to understand further.)
I was driven by the pain to attempt to "stage" an accident which would force an amputation (at a young age, even a severe trauma would cause surgeons to do everything they could to salvage a limb) due to severity. But when they said that it wouldn't even work if I could find someone willing to do it, I knew I just had to keep looking for other options.
This is what my docs explained to me-hope this helps.
Lori Lee

Jo -

Check this one out:

Amputation for reflex sympathetic dystrophy, Dielissen PW, Claassen AT, Veldman PH, Goris RJ, J Bone Joint Surg Br. 1995 Mar; 77(2): 270-3, FREE FULL TEXT @ http://web.jbjs.org.uk/cgi/reprint/77-B/2/270.pdf

Department of Surgery, University Hospital, Nijmegen, The Netherlands.

Comment in:

J Bone Joint Surg Br. 1995 Sep;77(5):836.

Abstract
We have reviewed 28 patients with reflex sympathetic dystrophy (RSD) who had 34 amputations in 31 limbs. The amputations had been performed for untenable pain (5), recurrent infection (14) or to improve residual function (15). Only two patients were relieved of pain by amputation, and this could not be predicted. Ten of 14 patients were cured of infection and 9 of 15 patients had improvement of residual function. In 28 of the amputations, RSD recurred in the stump, especially after amputation at a level which was not free from symptoms. Because of recurrence of RSD in the stump or severe hyperpathia only two patients wear a prosthesis. Despite this 24 patients were satisfied with the results.

PMID: 7706345 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/7706345

Please look at out the one paragraph Conclusion at p. 273.

Mike

it really annoys me that people use this paper and leave out the bit at the end which states that many were satisfied with the outcome. In fact in the full paper it says 73% of upper and 67% of lower amputees were satisfied and it was higher in those who elected surgery

This is the 7th step I am trying to get the UK Government to undertake
I have done over 3000hrs internet research, with no medical training I had to approach it the only way I knew how, as a Police Officer with 8 ½ years experience who was lucky enough to only lose one case in court. Search everywhere I could, looking for clues and evidence follow every trail no matter where it lead and when it ended go back and follow another, piecing everything together into a case that would convince any judge and jury in the land. I have to ask you to trust me on this, because of the way my brain works now I didn’t realise the significance of some papers until months later or because of the mental and motor control problems I hadn’t saved them when I thought I had.
In the space of 7 days in Oct 2010 I came across papers by 3 US doctors working in separate Hospitals, unless as I suspect the 1st and 3rd are ex-US army there was no apparent connection between them. The first was a surgeon who stated that since he had started using a full sympathetic nerve block from 48hrs pre-op to 48hrs post-op not one of his amputees had suffered from Phantom Limb Pain. The second doctor described CRPS pain as Phantom Limb Pain with the limb still attached. The third stated that since he had started using continuous full sympathetic nerve blocks not one operation on a CRPS sufferer had caused a spread or flare.
In late 2011 I came across a paper detailing US army surgeons research into Phantom Limb Pain which was started in the early 2000’s. It stated that they had found a direct link between the incidence and severity of pre-op pain and the incidence and severity of Phantom Limb pain. They came to the conclusion that the initial pain was so bad that it burnt itself so deeply into the brain that the brain could not forget it, (exactly the same as CRPS does) if they could eliminate the pain prior to amputation there would be no phantom limb pain afterwards. How they got from there to the successful use of full sympathetic nerve blocks I have no idea.
I later came across posts by 6 CRPS sufferers who had amputations using this method while awake, It is suspected that general anaesthetics themselves can cause spreads, everyone stated that they had no phantom limb pain and no more CRPS symptoms, 2 had already had artificial limbs fitted and returned to work. Now no amputation should cure mental problems a fact confirmed by Professor Briggs at the RNOH. This has led me to the belief that the Americans have discovered a cure for CRPS but because of a lack of communication they have failed to recognise it yet.
I asked Professor Briggs to bring me in and give me a continuous Full Sympathetic Nerve Block for a period of 5 days, if at the end of that period the symptoms have completely disappeared then its likely we have a cure, obviously further trials would need to be undertaken. If the symptoms do not dissipate on the 6th day my arm would be amputated below the elbow while I am awake. Although this would not help me as it is in both legs as well I feel it is the only way to prove to our doctors that there is a safe way for them to operate on CRPS sufferers and a way to prevent anymore amputees developing phantom limb pain. I have given Professor Briggs a disclaimer absolving him of any blame should anything go wrong but cannot get him to make a decision, despite saying that I wanted no more appointments either a yes or no on the procedure I have been sent another appointment for 24th Jan next year, by that time I could well be one of the full body sufferers, this has now been put back to February.

I believe that the chance to find a cure or at the very least prevent any one in the future suffering from Phantom Limb Pain or an unnecessary spread of CRPS/RSD in this country is worth any risk to myself so I ask the DoH to arrange and fund this procedure as the UK’s first clinical trial into finding a cure and I am willing to sign any form of disclaimer your dept requires. The savings in the costs of appointments and medication for Phantom Limb Pain sufferers alone would eventually more than cover the cost of the procedure and if it is a cure the savings could be in the billions

Hi, I do know a person in one of my facebook groups that had both of his legs amputated. A form of treatment to try for your RSD that is not invasive is calmare therapy

Hello~ my 16 yo daughter has CRPS and has had it for over 3 years. We have done every treatment available, including Ketamine (both low and high dose) infusions (8 times), IVIG, high dose IV steriods, IV lidocaine, multiple injections, blocks, therapy with no positive outcome. She has become bed ridden, cannot go to school, cannot do school work, cannot enjoy her teenage years because the pain is so bad it cripples her. She has it in her right foot/ankle, her toes have become dystonic and she has lost the ROM in her ankle. I go into her room every night when she is in deep sleep and manipulate her foot/ankle/toes. About a year ago I found Calmare Therapy and was reluctanct to try it, but thought what the heck we have used everything else. We were very surprised wth the outcome. It truely does work, although not for long, but she had 3 months of life back! I have found that the person doing the therapy needs to be very experienced. The electrodes need to be in the right spot, and moved around to get the right "feeling" when the machine is turned on. We have been back to RI 3 times and are going back for our 4th session. Ketamine infusions interfere with the calmare signal, so that is why she is having a difficult time holding on to the non pain stimuli. The last time we were there the nurse that was administering it could not find the "right" place for the electrodes until our 4th day there. So please don't give up hope. Once you respond to Calmare you will always respond. This treatment is a miracle tx for us(a bit expensive) but worth it!Good Luck!!!