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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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01-12-2014, 08:45 PM | #1 | ||
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Senior Member
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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.
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02-17-2014, 07:23 PM | #2 | ||
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Newly Joined
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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? |
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"Thanks for this!" says: | birchlake (02-17-2014) |
02-17-2014, 08:40 PM | #3 | ||
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Elder
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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 |
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06-12-2014, 08:57 PM | #4 | ||
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Junior Member
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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 Quote:
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06-14-2014, 08:10 AM | #5 | ||
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Member
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Quote:
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 |
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