[QUOTE=emptydepth;688395]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[/QUOTE

I completely understand the place in your life that you are in. I have been there myself, heck, who am I kidding, I was there just a few weeks ago. I understand the stage in you life when the only
only thing that seems to be your next option is amputation & I am so sorry that you are at that point. But let me tell you what all FOUR Dr's at the Mayo Clinic told me just a few weeks ago when I asked them if that was an option to help my pain. They all told me that I would still have ALL the same pain of the RSD without the limb.

PLEASE get advice from several Dr's before continuing with this plan. I know how hard this disease is and how much it takes from you. I would suggest that you get a good Pain Management Dr, Neurologist & finally a therapist. NOT BECAUSE YOU ARE CRAZY!!! Chronic pain has been medically proven to cause depression. A good Psychiatrist linked with a therapist has helped me in sooooo many ways to learn how to deal with the many ways this disease has changed my life. It has helped me dealmwith the changes, cope with the pain & the LOSS of me!

I am truly sorry that younger going thru this, but remember that you are NOT ALONE! May God bless you with peaceful sleep.
Gentle hugs, Renee'

I also do not think that amputation is a wise idea for RSD. The end result usually ends in phantom limb pain which is very painful.

I also think that you might want to contact Dr. Rhodes in Corpus Christi.

I traveled a very long way to see him, but it is worth it. His treatment is non-invasive and can be administered at home. After your initial stay at his clinic, you do not need to go back unless you have a very severe flareup.

Please contact me if u have more questions and I will give my email address.

Amputation is never a solution to anything other than for the purpose of saving your life.

First, though there was a brief time around ten years ago when a few doctors felt this was a good idea, yet the fact remains that you never chop off any body part unless it's in the process of taking your life. No insurance will ever pay for this solution unless your life is at real threat due to blood clots, complete loss of circulation in the leg and/or severe and chronic infections.
Secondly, you cannot guaranty that just because you've chopped off the leg, you're cutting away the pain, in fact I think you'll find it exactly the opposite. Ever since I've had my high above the left knee amputation my pain levels have increased. My internal morphine pump dosage has been increased considerably due to there being more pain.

I understand why people are willing to do this, but sadly enough the reality is that amputation is never considered a viable option for pain management. Meanwhile don't give up because while I'll never assure you a pain free existence, there are things that can make a huge difference.

I'm on 160mg of OxyContin in addition to my now second internal morphine pump (first one lasted 5 1/2 years before the battery finally gave out) plus I take OxyIR throughout the day for breakthrough pain. While this is a considerable load of medication, I'm surprised at just how well this combo works together. It's expensive and it's hard on our body, but the fact remains that due to a very caring and brilliant specialist, we do manage to control my pain to average levels so I'm still able to enjoy more of the day then despise it. Sure there's electric jolts that can blow me out of my wheelchairs, spasms, and hot burning knives that can sort of ruin parts of the day and night, but life is a whole lot better with it than without it.

According to my doctors, the more we're in pain, the better we actually get at accepting and living with it. We learn how to live with more discomfort over time, and in time so will you. There are solutions for managing your pain levels better, but sadly enough cutting it away isn't the one that works in the end.

Best of luck and if I can be of help, write me. Bob.

I have had RSD since 2003.I was at the Pentagon Sept 11 2001 and I was a Marine. I had over 5 ankle surgeries, nerve blocks, stimulator, several rounds of different types of medications, PT, and nothing worked. Unfortunately mine has began to spread up my leg. I have always been an active person, even now I do push ups, pull ups, and I row but doing these events causes tremendous pain at the end of the day but I just cant sit on a couch and feel sorry for myself. I have a friend who had an amputation due to the pain from RSD and he says his quality of life is so much better now. I have decided that I too want an amputation before it spreads up my entire leg. I am at a lose lose situation already either I attempt to get an amputation now and hopefully get rid of the pain or continue to wait until it spreads up the rest of my leg and I am in a wheel chair. I am still relatively young and I am done being poked and prodded and I refuse to live off medications the rest of my life that change my mood. I have a five year old who deserves the best of me and being on pain pills my whole life I feel as though I am cheating him.

I really dislike giving anyone advice on their treatment options...as we are all different and I don't know you...but amputation are very strongly advised against with RSD...the primary reason being that it often does NOT get rid of the pain. Once you have RSD...you have it...and even with amputation the pain continues. I don't know your friend...and I'm not saying they are lying...but everything I have ever read says amputations are a BAD idea. It's not your leg that has the problem...it's you nervous system. Even getting rid of the bad limb...your nervous system is damaged and there's nothing stopping spread of the RSD to a new area.

That said...we are all affected differently. Some people never experience spread (lucky them). In the end...we all have to choose the treatment options that are best for us as individuals.

I would just beg and plead with you to read up on ALL the experiences (good and bad) when it comes to amputation of an RSD limb. You will find there are lots more bad than good...your friend's case is rare. If at the end of all that...you feel that it is worth the risk...then that's your choice to make.

I wish you the best of luck with this.

I am sorry you are dealing with RSD. I hope yours doesn't spread. There have been a few folks that have had ketamine infusions on NT. I don't remember off hand how their experience was. However I have researched this to some degree. I also had Ketamine infusions in my spine, which worked for a good long time.
The Military are the ones who started to use Ketamine with their wounded soldiers. There were quite a few articles on this in JAMA, which is a medical journal that keeps up with the latest research. If you are near a teaching hospital, they often have a med. research library open to students. I got access to this library, simply by asking my doctor at the time. These libraries have the most recent articles about Ketamine. Please don't think about amputation. You have posted where you live, so perhaps there will be someone on NT who knows of a physician in your neck of the woods to be using Ketamine. Tampa Bay hospital near where I live, does do research on this medicine.
The articles have shown a good response for our soldiers getting Ketamine. I would be willing to look into where in the country other facilities are, that do use this medication. Try to find a teaching hospital, this was the best way I found to access the newest in the trials, and use of Ketamine. I really do hope that you find someone who will treat you with this medication. Try every therapy you can, and don't give up. There are locations using this. ginnie

I've already looked into an above knee amputation. It doesn't work with people that have CRPS. The nerves that are involved are in your back also. They miss fire from everywhere along them. I was 24 when I got this disorder and it's beem 10 yrs. I haven't walked normal since. I have a lopsided gait. The only time they will do an amputation is if you have deep vein thrombosis or something similar that is causing severe blood clots. I've even thought about staging an accident to make them do an amputation just to stop the pain. So yeah it doesn't work. Mine didn't start spreading from my left knee till after 3 surgeries, and 2 pregnancies. I now have it from mid thigh down to my toes. Keep your head up, keep moving, and keep positive. Thats my best advice.

You can use the search feature to find many posts about RSD & amputation on the forum here.

Get as much info as you can before making any decisions.
Try as many other therapies & treatments as you can before making a permanent choice like this.

Other treatments ideas -
Maybe even hypnosis - I sure would try it before amputation...
SCS
Pain pump
HBOT

the members here probably can add many more ideas..

Although I have fantasized about amputation taking away the pain, I don't think it could rationally be the answer. Research a lot before making this choice that cannot be undone. Best wishes- lottie

If only people would heed your words. We both know the odds of finding a doctor who'll actually cut off a leg without there being one of the problems you listed above as being somewhere between nil and impossible. Then of course there's the little glitch of getting insurance to pay for it. I'm not trying to be harsh, but just because "we've" found a solution doesn't mean the others who have the power, education, and the checkbook and who're just as involved will actually proceed just because "we" said this is the solution. There's times we just have to accept we're stuck with whatever we've got. Living in my worthless body from the waist down is what I'm stuck with. It might not be easy but I'm thankful each and every day it isn't worse. Trust me, it can be. Now here's hoping you'll find other solutions that WILL work. Even a scant 20% reduction in pain can make ALL the difference.