Quote:
Originally Posted by emptydepth
Okay, so ive had my RSD for about two years now, i have it in the side if my right knee and sometimes in my shin. i got it from sports and an accident, im actally not sure what exactly caused it. Anyway, i desire more than anything to be able to walk normally again, ATLEAST. Fortunately enough, my Rsd hasnt spread to anywhere else in my body.
ive done most everything to try and fix it. ive had several lumbar Nerve blocks, ive tried physical therapy, ive tried a tenz unit (still use it on those occasional days with random nerve spasms) Several Seizure Medications, waiting (maybe not long enough). Anyway, ive tried everything short of a Ketamin infusion and Amputation. I was just wondering if anyone here had either heard stories of Amputations or had actually had one done? Or if people had any advice as far as treatment goes? 
As a side note, i am slightly concerned about cost but only because im a minor and im unsure what my parents insurance will cover. Id like to know what im dealing with first hand before i go to them for fear that theyll reject it. While i may be concerned with price of amputation and prosthetics, the price of walking and atleast being able to function semi-normally is priceless to me... Thank you for any help you provide |
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
06-14-2014, 08:10 AM
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