Glad to see you got so much great advise. I think you scared us...

I was also glad to read that you go to concerts and still excercise when you can.What type of music are you into? We are a big music family my husband, son and daughter all play an intrusment or more than one and my son and daughter are both in local bands. I have not one lick of talent in that area. My son has actually recorded in the studio about 4 times so far, there music is that hard metal screamo. I don't get it but when they play out the attendance is quite good. And my daughter who's younger and just starting with a band plays piano but for her 16th b-day all she wanted was a "Roland X...keytare syntheasizer" this piece of equipment can do anything it's white just beautiful. I am a typical mom I won't support the bands and all that comes with that unless the school/college grades are there and they both do well. My son starts his second year of college on Monday and she will be a junior in high school goes back on the 7th. Education is so important and whatever career they choose you have to have education behind you.


I hope you find some relieve in the near future and post to us with any questions or problems. This site has helped be so much you just have to pick and choose what advise is best for you..

Good Luck.

Gabbycakes

Last year I had a high above the knee amputation of my left leg. I was scheduled for duel above the knee amputations, but the day before surgery I backed out and decided I could only handle one at a time. The doctors regularly remind me that the right leg still needs to go. Now let's talk about the why.

Doing an amputation for pain management is by my opinion the worst solution since I've learned firsthand that not only did my pain levels not decrease, but actually increased on the left leg that was amputated. If you're thinking you can cut off the pain, I'm so very sorry - but my experience has shown me that this simply isn't what will occur.

The reason we did amputate (and have more ahead) is because my crushed nerves and RSD (that spread to both legs) has battled incessant infections and blood clots problems for years. Both legs are narcotic (black as ink). We've been forced into amputation simply because the body parts were already dead.

Ironically I expected both the blood clot problem and the pain to lessen once I had at least one of my black legs removed, but that didn't turn out to be the case whatsoever. Instead I'm taking nearly twice the dosage of blood thinners so we can keep me in a safer blood thickness zone and my internal morphine pump (I'm now on my 2nd one - I've had then for 7 1/2 years) had to have its dosage increased another 20% even though I was already at a very high internal drip rate.

Because RSD usually won't tolerate anything applying of pressure such as a sock, or pants or worse yet a prosthesis, this has made any kind of fake leg an option that won't work for me. I've also been told that we could still be looking at a stage where we'll need to take more off of the left leg. "Yikes, I don't have 4 inches of stump, and they're advising we could take more!" It's all because RSD can spread - well at least in my situation it has like a wildfire.

If you want to talk more, please contact me and I'll share anything you want to know regarding the gruesome details of the hell that followed my radical pedicure.

I see amputation as a method of pain control as being equal to buying a new car when your engine goes out, except in this case you switch out the car body but you keep the old engine. The RSD will have not gone away, so chopping off the problem isn't really a solution that eases the pain whatsoever.

Very best of luck, and please make sure you make a very well informed decision before choosing this life altering of an option. I know this last year has been a unique hell that's been so hard, I'm not sure I'll proceed with my second amputation even though I know the consequences of my actions if I don't. The changes you're looking at must be fully understood and explored before this type of radical solution.

I too am sorry you have to deal with all of this pain at such a young age and face the emotional details that go along with it. But I have to share with you because I too most recently faced this dilema. First and foremost, you are young and still in the time frame of complete remission. I nearly severed my foot off of my leg nine years ago, I have no motor units functioning in this foot, causalgia, total posttrauma and disfigured, it serves no purpose and creates alot of pain in my world. I have had nine surgeries to repair all of the damaged areas but still have the pain. About six months ago my doctors and I discussed amputation and I even went to counseling on prosthetics. At this time, I have decided to not take that road. The risks are high and the stats are low. I talked to one guy who was 35, he said it was the best thing he ever did, but he had trauma to his leg no RSD. All others still had phantom pain and as the article states most people could not wear the prosthetics due to the rsd and/or phantom limb pain. I can get up in the morning or the middle of the night and walk on my foot, yes some days a little rougher than others but it does get me to where I am going. If I were to take the risk and amputate and still have pain I think emotionally, that would be more than I could bear. So...I say keep what you have, you are young and resilient, many people especially young do have spontaneous remission. And what is normal, everybody walks different, maybe you are unique and have character. Build on the positives, try not to get to washed up in the negative forces of this illness. Denial works great for me, I have never once believed that I have this illness, I just do the best I can with what I have, I really don't care what they call it, its what I believe that matters. Find a way that works for you to focus on what you can do and build on what you have and each day strive to move forward. Best of luck!

Emptdepth,, Once RSD is chronic(which yours is) anytime there is an injury causing pain to your body the RSD will send more signals of pain from your brain. So if you amputate(which believe me i have considered until i researched) your foot the RSD will get worse and possibly spread to other areas. You also run the risk of phantom limb pain where your brain has had pain for so long that even when the limb is removed your brain still sends pain signals to a foot that isnt there. When blocks dont work anymore it means instead of sympathetic mediated pain it is now sympathetic independent pain. The brain was overloaded with pain signals so instead of sending messages thru normal pathways the brain has found other pathways to send pain. So removing your foot could actually cause RSD to spread to anyother limb. Unfortunately, like you, i still have times that i could cut off my arm because of pain but i know it wont help. momof4

Cutting off the pain is a no win situation. I'm so glad you did your homework and didn't chop off a body part with the hope of chopping off the pain. I assure you, if I hadn't been forced into my amputation (body wide septic is the stage when you don't have much choice) I never would have done it. I supported black legs (and still am my right one) for years, so even when it looks all black and nasty, don't think you're at the end of your rope. It's amazing how bad it can get, yet cutting off the limb only causes new or worse problems. The amount of pain I have in my short little stump amazes me. I have every bit as bad of RSD type pain, but now I also have shocks that will support a coffee pot or at times my 2 ton A/C unit outside my kitchen window. We're talking about very intense experiences here! While I understand the desperation of wanting the pain to stop, I must assure the original writer that this is not a solution but instead will only cause more grief and sadness. Boy am I glad you did your homework. You're a smart person!

At 44 years, diagnosed 2 yrs ago, I too have tried to see the positive in that I have travelled, fallen in love and had a rewarding career. . .you really do just have to acknowledge the positives.
Empty, I agree with Finz. . . please don't do it!!! I have often thought about it myself except that I have this monster in both of my legs, so amputation would see me perched on a skateboard using my arms for motion!!! Besides, I am way too much of a shoe addict not to have feet!!
Since most RSD cases are a direct result of some form of trauma, the body might not acknowledge the amputation as a helpful medical procedure but rather another trauma, which could cause it to spread rapidly. I too have heard of the 'phantom pain.'
In my opinion, the risk is too high. . .
take care,

Kelly

I have had RSD for 8 years in my Right Knee & Left Wrist. NEVER, and I can firmly use that word, NEVER should Amputation be used PURELY for RSD. If there are other issues, then I can't speak to that.
I was told by the orthodox that did surgery on my knee and by the one that operated on my wrist, that both joints would be as useless as amputated limbs, but NEVER suggested it.
After 2 years I found a pain Management
Doctor that cared & knew what he was doing. I was admitted to the rehab floor of an Acute Care Hospital. He inserted a catheter that injected An Anesthetic into the areas of concern.
Physical Therapists & Occupational Therapists Did Everything but Twist my Limb Totally Off. I Felt Some Pain. It was INTENSE -- 10 Hours Per Day; 7 Days Per Week.
I now move all five fingers - before none. I walk with NO LIMP, I DANCE WITHOUT having to take pain meds first.

My Advice To You: depending on finances, start training like you were in the race of your life. IF you have insurance & money, find the appropriate caregivers----If money is an issue, and it is with me NOW, then You Can Become your OWN TRAINER. Just Move that joint all the time - use NSAIDs (if ok with ur Dr). I found Motrin to be the best for me. So here is my schedule NOW that I have no money:
* I use Motrin Daily as needed
*I work exercising ONLY the injured area for as long as I can stand it.
*Ice it down for as long as you can stand it -- short periods at a time. Minimum 1 Hour.
*Then start again. Forcing movement of your affffff

Great advise. I have found the same experience works for me also and when I don't do it I feel worse.It took a long time for me to become a believer. My doctor always would say "get in the gym". Sometimes it's not easy especially if your just starting but so worth it as it begins to work. It's not easy when I have my ups and downs with the RSD and the PN I honestly just start feeling sorry for myself. I will stop being good to my body it's almost like I'm punishing myself for having an accident, like I had any control when it happened. Anyway when I keep myself on a excercise schedule it even helps my mood.

I agree with you and thanks for the great piece of advise.

Nice to meet you..

Gabbycakes

Thanks

I am a 24 year old male who Struggled with RSD for 2 years. I fractured my ankle in 2008 which turned into RSD not long after and from there they tried every pain management technique available, lumbar blocks, Spinal cord stimulator trial no response to any of those. My surgeon said he would amputate if id like I jumped right on that. In the state of mind i was in I was ready to do anything I could to relieve the pain. I had my right leg amputated below the knee january 2010. I did have substantioal relief from the operation and Have no RSD that I know of. But now i struggle with the dependancy issues of the opiates. I checked in on my own 2 months after the amputation to get off the opiates and its not been easy. I attend support groups weekly. I also deal with alot of depression from the amputation which still in physco therapy for. All and all my life is slowly getting back to normal. I am back in school finishing what i had started in becoming a probation officer and have 3 wonderful children who love daddys metal leg. Its a long process adapting to the prosthetic but one you get a great fit you will be unstoppable. Just thought id share this information. Also i do have days where i still think i have my leg on those days i usually end up on the floor because i fell. IT will happen trust me.

I just wanted to say Im sorry youre in that much pain. I remember not long ago my husband was having a really bad night and he was crying that he wished he could just cut his leg off. He at one time asked his PM dr about that and he told him that even if they amputed his leg, the rsd would most likely move to another part of his body and at very least to the site of amputation. That he would never recommend it for rsd or consider it.

Hang in there, I know it must be incredibly hard for you to deal with this crap at such a young age *hugs*