My pm dr told me that amputating an rsd limb would only make the rsd worse. I considered it when I first had rsd almost three years ago, but my pm dr said he wouldn't consider it because he said he wouldn't help. I hope you can find some relief with your pain some other way and soon. Take care.

I haven't had an amputation... but I have rsd/crps, and I have long thought about amputation. My doctor in the Navy first mentioned the option in 2003. The option has been talked about twice since then. I started thinking about it again today, as the pain has been exceptional today. I found this site and thread, and I read. Boy do the opinions vary.

However, two studies one in 1995 and one 2012 have examined this subject. Surprisingly, the vast majority of patients who opt for amputation are happier for it. They don't regret it. They would do it again. I cannot post the links at this time due to forum rules.


The question of course is it right for me? Will it work for me? Would I be happier without my leg? Would I be more functional? Would I be less suicidal? Would I... oh would I?

I don't know the answer to this question, and I still ask it to myself. I still wonder, and I want to know. I know today I use a wheelchair mostly. I wonder...

Someday I may no longer wonder, and I will post in this thread if it exists. I just know that I have tried to kill myself four times in ten years, and if this option has a slight chance of working wouldn't it be worth it? Would it be better than the alternative?

I don't have CRPS but I have friends that do. Have you been offered Ketamine infusions? This stands the test. It has been in the Medical Journals, as help for CPRS. I would go to the ends of the earth, to try this. I had the infusions for my cervical spine and it worked wonders. Our military were the first ones to use this drug as an infusion for severe wounds that produce CPRS. I don't know where you live, but if you post near to where you are, there are folks on NT who have also tried this. Don't opt for amputation until you try this. I know for sure that Tampa Bay Hospitals works with this medication. (Florida). Some pain specialist also have used this drug. ( Dr. Ramos Bradenton Fl.)
You do need better pain control. Don't end it, as there is still a lot of hope out there to try yet. Those thoughts often happen to people in severe pain. Don't loose hope, but research this drug, and where you might find availability. Ask your PCP if he knows anyone, or your pain specialist. Fight for your quality of life. NT will be here to listen anytime. You are not alone. I truly hope you can find better relief, and a better way to go forward with your life. ginnie

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!!!

Hi

Welcome here and sorry you have RSD. You came to the right place. I read several other replies/posts and people here gave you fantastic advice, thoughts input so I won't repeat it. I will say that you seem to have a fighting spirit and full of energy and drive so that will help you get through this, help you find helpful doctors and keep your mind in a good place. Treatments have gotten better over time and RSD is not a short, simple disease so it can take years and various treatments and you have to make adjustments and deal with some new normals if that makes sense. BUT you are young and there is always something new on the horizon so you never know what meds or treatments might come around!!

Don't do anything drastic (amputation). RSD is not like other conditions or injuries. It has its own mind....

hang in there

RSD forced my doctors into chopping off my left leg HIGH above the knee (they wanted both legs but I decided to keep my necrotic/black right leg). There is only ONE reason ANY reputable doctor will amputate a leg and that's when it's so severely infected, you're just about to die. That's called going septic/body wide blood disease where you're being poisoned to death.

I am TOTALLY empathetic of the severe pain you're in and why you're willing to chop off the leg just to get away from it. The problem here is it DOESN'T WORK! I still have just as much pain in my tiny little stump as I did before. The horrible hot stabs, deep throbbing that goes on forever, and spasms are not illuminated just because you've chopped off a leg.

NO, your insurance will not cover this procedure unless you're life is in immediate danger. They also won't let you choose this option on your own since you're not of age. Your parents would first need to sign off on this horrible body mutilating, life altering sugary. What do they think of your idea?

I live in a class III wheelchair (just like the one Steven Hawkings uses) and so I don't think you've totally thought through just HOW much you'd be giving up. Meanwhile, I also didn't read anywhere in your posting about other pain management options your doctors should be exploring. You haven't begun to empty out other remarkable & effective options that could greatly reduce your pain while increasing your enjoyment in life. These includes for example 80 mg of OxyContin twice a day plus OxyIR 5 MG for breakthrough pain throughout the day and/or an Intrathecal Morphine pump ALL of which I'm currently taking even we've chopped my body in half. Chopping things off won't make the pain go away!

RSD is and can in some rare situations spread. My doctors have already spoken to me about amputating even more of my nonexistent left leg except this time they'll be removing my entire hip area and and butt cheek. My RSD has also spread and taken over my entire right leg. I also battle chronic blood clots and more. Only when you're in this SERIOUS of situation is amputation a necessity. Meanwhile push for other pain management options such as those I listed above. Wishing you all the best, but don't assume the worst. In 90% of ALL RSD cases, RSD will either greatly subside or go away altogether in 24 - 36 months.

This note might sound hard but it's ONLY because I care. You don't want you to live in the body I'm stuck with I assure you. Bob