I'm so sorry to hear about your terrible pain!

I've only had RSD for 4 years, but I am also only 16. My doctor thinks I may be the youngest in my state with RSD.

Please, before you consider amputation, remember that with amputation new pains come. You may be more used to the RSD's unique pain, but you might not be used to phantom limb syndrome, and that can be just as hard to cure. If you believe that is your only option, then you should do it. But just do a lot of research and see many doctors!

I'm sorry! Hugs

Amputation isn't the way to go. Before I was dx'd I asked the doc I was then seeing if I could use a shotgun and 'self amputate'. I was informed the blood loss would kill me nearly instantly...dang it. I'm unsure as to the poster, but I agree with the idea that you need better pain control. I'm on MSContin, oxycodone for breakthrough pain, soma for muscle cramps and serax for the panic attacks caused by this evil condition. It is in your best interest to stay as mobile as possible. I know that sounds ludicrous if the pain is bad enough, but if you can get the right cocktail of meds together you should have some period of time during the day to use your body. It makes the pain get better, but you must continue using it, regardless. Seems that the folks who followed medical advice during their initial injury and rested the damaged limb have it the worst. I had to work, so I guess I can thank God I was poor...lol...Try to get the meds right, pain under control, and then, when you're not mentally fuzzy from the pain, look at your options. Later, Smoke

Hi my name is Tina Leet and I am currently still in the navy and facing the med board. I got diganosed with RSD type 2 back in 07FEB2008. And you know navy doctors, well we have tried everything and know they just don't know what to do. I keep telling them to amputate because its already spread through my lower right leg. Mine started off the same as yours did the inside of the knee. I have not walked in almost 3 years and I can't take it anymore with the doc's just saying well maybe in 5 years they will have a cure well for me that's to long to wait and if I wait that long it might be in my left leg. Any way I just got back last week from a military paralympic camp and I met a guy from Isreal and he had RSD for 8 years in his left leg. He pushed for amputation and the doctor did it. I asked him if he still has the disease and he told me he has no pain and he was walking and running on his prostetic! He told me that they have to amputate at least 5 to 6 cm above where the RSD is for the best chance of getting rid of it. He has been RSD free for 3 years now! But you have to remember that it is a 50/50 chance that either the RSD will be no more or that it will make it worse and spread faster. And the bad thing about that is that no one knows how it will turn out until they try. I have done so much research on this disease ever since I got diganosed with it because I thought that my neurologist in Japan was making it up. I guess I just didn't want to believe him because of how terribable the RSD is. If you have any questions or if you get any more information please email it to me I will do the same if you want me to. Also I will ask my friend if he wouldn't mind me giving you his email address so you can talk to him on this matter.

Thank you

Tina

I understand the desperation you're going through and that you're willing to try anything. Now the question is, how much are you willing to gamble?

Legs don't grow back so while this one guy evidently had great results by having an amputation this doesn't change the fact that most research on CRPS/RSD shows that amputations rarely make the situation any better and can often make it worse. Only you can decide if you want to take the odds of being one of the lucky ones or if you'll accept the word of men who have spent years of their lives learning and working with this health problem.

Las Vegas in all its splendor wasn't built by giving away money. It was built because of all the money lost. Now are you willing to live with the possibility of having even greater difficulties in life without a limb by betting it all? I know my RSD didn't get any better after I had my first leg chopped off and we still need to do the other. Guess amputations don't always stop the RSD from spreading after all. Now please think through this life altering decision very carefully. In the end I respect whatever you choose and who knows, maybe for you it really will work. Now the question is how you'll find the doctor and the money to pay for it? This kind of surgery requires a great deal of skill so please make sure you've got the very best doctor so your odds of success will be hopefully a bit better. The lottery is won by someone - maybe this time it's your turn. Bob

Amputation isn't going to help you, only potentially make a bad problem even worse. I doubt any of us feel you should just stay on meds and suffer but amputation isn't a decent alternative. No one knows what research over the next few years could bring. Work the problem till then, don't amputate it.

Good luck with whatever you choose to do,
Dawn

Dear Tina,

You need to get a referral from the Navy docs, who you say "don't know what to do," to a good PM doc in your area that DOES know what to do.

The RSDSA.org website is an excellent resource for research articles and also has an area where you can look up board certified PM or anesthesiologists in your area. In addition, Jim Broatch can provide you with a list of docs that provide ketamine infusions. (Tricare is a great plan and may cover ketamine).

Let me know if you have any questions. The most important thing to remember is to NEVER EVER give up trying to get better!!

Wishing you the very best, Sandy

From all the research I've done most spread occurs in the first year, so maybe it's as 'bad' as it'll get. An aside, I've had two nearly full remissions, no meds required, since '03, and am currently experiencing another lessening of pain. There is hope. God bless.

Damn I'm sorry that you have had it that long. I wish you good luck with this new neurologist. I had luck with my first neurologist but there was nothing else for him to try and or could do so they medivaced me from NAF Atsugi, Japan to Balboa. And yes I tell everyone that's all that I am is a guinee pig. I'm so sick of it but I imagine you are so much more than I can understand. But I just got more test results back from my urology specialist and she said that the RSD is causing me to have bladder work way to hard and also that its starting to make my kidney's not do to good. She said there is really no way to fix this and getting you a kiddney transplant they wont do because of the bladder. So she told me that within 10 years or sooner I could have kiddney failure. She said that the only thing they can try to do is implant this interstem therapy device which is just like the spinal cord stimulator which I had before and it sorta worked. But then I fell and it made everything worse so they took it out. So anyway she said it might relax the bladder to where you could have more time but thats all we can do. And I'm sick of when people bang my leg because it makes me pass out and go into a seizure and I always wake up in the hospital and the er docs are sick of seeing me there because there's nothing they can do so its just a big waste of time. So that's just a few of the reasons why I want that so bad besides that I might have a chance at learning to walk and maybe even run. Are you able to get up and put weight on your leg?

Thank you so much

Sincerely

Tina

I am sorry that you have been suffering with RSD for so long. I was diagnosed with RSD after my 3rd back surgery, 3 years ago. I have absolutely no feeling in my left leg, but the pain on the inside is horrible. I am now getting the pains in my right foot and the neurosurgeon told me last week that the RSD is starting to attck my body! I completely understand when you say you want to have amputation because there are times when I tell my husband I just want to cut off my leg!!! I am glad that I found other people to talk to about this, because when talking with people suffering with the disease, I know they understand what I'm going through.

what i have been told is cut of part will make you wish you where dead it make the rsd got nuts do not know if it write or not