RSD Above-Knee Amputation Questions! TREATMENT HELP PLEASE!
 

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? :confused:
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

It's truly hard to advise a young adult on such a question but I will try. Amputation I believe does not even come on the radar when it comes to RSD. I have never heard of anyone having a amputation because of pain from RSD. I am assuming you have a pain doctor who you work with you state you have had many blocks etc. I have also had so many blocks and have done 3 - 5 day in-patient ketamine infusions and believe me they are not the end all. But that is a far better chose then amputation please don't think that. As far as insurance for amputation I have no experience sorry, but ketamine is tricky. My insurance did cover most of the procedure, hospital stay and I was in ICU. I did have to come up with a good amount for the actually ketamine itself and the monitoring of my doctor, each time I had to pay $3500 upfront. I was very lucky they covered it like they did. I did my treatments in 2005-2009. I have heard the complete opposite where insurance won't cover in-patient at all. I think it demends on the insurance company itself they all have there own rules when it comes to Ketamine Procedures, some will cover in-patient, some will only cover out-patient and won't cover anything.

You should really discuss this with your parents first and then have a discussion with your doctor. Hope all goes well and post anytime for advise.

And now I am going to put my Mom Hat on "get that crazy idea of amputation out of your head"...RSD really sucks I've been at it for 7 years your definitly not alone. Try and keep positive. When I started I thought how could this happen and felt like you do but after all these years I actually went back to work, only PT, but it's a great feeling. I still can't do what I did before the accident but when we went on vacation this year I got brave and went to a water park and went on all the rides except for one and I'm 47. So there is light at the end of a very long tunnel. My son was an athlete all his young life until he graduated High School he played Ice Hockey from 2nd grade. What sport did you play?

Oh,one other think. I met a group of people at the RSD Walk in Central Park, NYC in June of this year and they spoke of a doctor from Texas his name is Dr. Rhodes. I think you said you are from Texas? You can find him on the internet just goodle his name. I forgot what kind of procedure he is pushing but this group just could not say enough good things about this doctor. I forget the procedure I apologize. But look it up you never know..

Keep us posted.

Gabbycakes

Hi,
 

I wouldn't think that there would be a Dr. that would go along with amputation nowadays. It's not the answer. I have two friends that lost their right arm around the same time and they both deal with phantom pain. Troy says it's just as if he still has that right arm. He has RSD from losing it and he said at times he even reached over to move his arm even though it isn't there.

I would try the lidocaine infusions or the ketamine. Also if you can find the right meds to help with the pain. You never said wheather you were on narcotics, depression meds, muscle relaxers, etc.

I have Methadone for pain along with Lidocaine patches. Others are on other meds such as Moraphine, Oxycontin, etc.

Others will come on here and tell you some of what they take for the pain. You might get an ideal of what to ask your Dr. for.

I have had PT, triggerpoint injections, years of PT, tried every pain med, and what I find is nothing gets rid of all of the pain. It's like a fire that has to burn itself down, that won't go out.

Desperation makes us do things we regret later. I ask my Dr. many times to cut my right arm off. We finally got it under some control.

If you stay on here you will hear a lot of ideals that you can take to your Dr. and see if he will try some of them. It's a trial and error with RSD.

Good luck,
Ada

Thank you! i know that Amputation isnt nessecarily the ideal treatment option but id love more than anything to get back to where i was... I was a kickboxer and a wrestler, which caused my injury :P I still do push-ups, Situps and when im having a light day i put on the tenz unit and jump rope (AGONIZING but worth it). Anywho, i appreciate the advice and ill take it to heart, and since i AM infact from Texas ill look into Dr. Rhodes and "investigate" his treatment :D

Same thing with me, the pain medication never took the pain away, it just chipped the edge. So the only time i use it is when i have like a concert or something. i tried the muscle relaxers and they didnt seem to do all that much... but ill deffinetly check the site regularly and see if any good suggestions come up... Thanks!!

I was thinking also.. what if the amputation just triggered more of the RSD or caused it to spread? :eek:

I think that is why it is not considered, I know many have mentioned they wished the affected RSD body part was gone, but I have not read of anyone trying it at all.

Sorry to hear that you are pushed to this state with this disease. I can totally identify. I personally requested that my left leg be amputated above the knee as my RSD is from above the knee and down to the ankle. I requested this of both a neurosurgeon and a pain specialist. Both told me that an amputation will not work to relieve the pain as the diseased nerve areas are actually tracked far above the area that it innervates (thus the attempt at sympathetic blocks in your back used for your leg.) This is why they reserve a sympathectomy as a last resort option, which is essentially removing the entire nerve segment much further up. I am told that the likely outcome of an amputation in RSD would be "phantom pain" resembling the exact symptoms that you have with RSD even though the leg isn't physically present. Amputees frequently experience leg pain after amputation due to the fact that the nerves don't recognize that the leg is no longer physically present (and something that you may want to research to understand further.)
I was driven by the pain to attempt to "stage" an accident which would force an amputation (at a young age, even a severe trauma would cause surgeons to do everything they could to salvage a limb) due to severity. But when they said that it wouldn't even work if I could find someone willing to do it, I knew I just had to keep looking for other options.
This is what my docs explained to me-hope this helps.
Lori Lee

Jo -

Check this one out:

Amputation for reflex sympathetic dystrophy, Dielissen PW, Claassen AT, Veldman PH, Goris RJ, J Bone Joint Surg Br. 1995 Mar; 77(2): 270-3, FREE FULL TEXT @ http://web.jbjs.org.uk/cgi/reprint/77-B/2/270.pdf

Department of Surgery, University Hospital, Nijmegen, The Netherlands.

Comment in:

J Bone Joint Surg Br. 1995 Sep;77(5):836.

Abstract
We have reviewed 28 patients with reflex sympathetic dystrophy (RSD) who had 34 amputations in 31 limbs. The amputations had been performed for untenable pain (5), recurrent infection (14) or to improve residual function (15). Only two patients were relieved of pain by amputation, and this could not be predicted. Ten of 14 patients were cured of infection and 9 of 15 patients had improvement of residual function. In 28 of the amputations, RSD recurred in the stump, especially after amputation at a level which was not free from symptoms. Because of recurrence of RSD in the stump or severe hyperpathia only two patients wear a prosthesis. Despite this 24 patients were satisfied with the results.

PMID: 7706345 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/7706345

Please look at out the one paragraph Conclusion at p. 273.

Mike

Hi Texas Athlete,
I can imagine as a young person, the devastation of the prospect of losing your health in this way. I do hope for remission for you. Younger people have a better chance of remission-don't remember where I learned that. Even though I wasn't diagnosed with RSD for 4 years, I did start physical therapy immediately after having surgery with resulting frozen shoulder. I also did massage therapy weekly before pt. I feel the massage therapy, though painful, was good for me. It warmed up my muscles to make the pt. go better.
I did go thru 3 remissions of each over a year. The remissions were wonderful. The RSD that started in left shoulder eventually moved to right shoulder. More pt and massage therapy-eventually a 2nd remission. Then while water skiing, felt pull in left hand-misdiagnosed-went to a University Town-Eugene, Or and went to the sports injury group of Drs. The hand orthopedic Dr. diagnosed me in 1 minute. Tests confirmed. Started in pt and he ordered Tens Unit. Came back to Arizona and found neurologist and Hand Ortho. both confirming RSD. Started pt and massage therapy and a BIG IMPORTANT Part of the ortho therapy was desensitization. My hand was put in warm glass jar with warm air whirrling sand around. Then both at pt and at home I had 5-6 plastic bowls filled with cotton balls, coffee grounds in another, pieces of fabric, beans, sugar, just anything of different textures. Putting your foot in each of these bowls are good for desenitizing your nerves. Because of delay of treatment my hand didn't recover completely. My fingers are curled like a claw, but they aren't sensitive anymore. I can cut my own food, peel potatoes, drive my car with both hands etc. I did have another remission of over a year, but moved to right hand, both feet, full body, called generalized RSD and now internal RSD and affecting scalp with lesions, rashes.
I belong to a local support group in Phoenix, AZ. The annual RSDSA meeting last year was here in Scottsdale. 128 attended Sat. then next day was for Drs.
Because RSD is an autonomic condition, meaning affecting our involuntary organs like regulation of our body temperature, both hot and cold. regulation of involuntary organs like heart, lungs, blood pressure and go both high and low. Too low can cause dizziness and passing out. And the third area is our immune system. An excellent website is rsdrx.com puzzles list Dr. Hooshmand practiced 40 years in Florida, mainly RSD and recently retired, but has website up. The puzzles are actually question-150 and his answers. Very Good.
RSDSA is a national organization. If you put your zip code, they will tell you closest rsd support group.
When I was diagnosed full body, my neurologist suggested seeing a psychiatrist to help deal with the life altering disorder. I found the most wonderful psychiatrist who also is a neurologist and pharmacologist. He brought me out of a big black hole. This life altering disorder is like a death-grieving over the loss of good health, the sports that you love, your dreams of a healthy life-and who knows may still be possible if you go into remission. Those that get therapy the first 6-12 months have an advantage of remission. Even a grief couselor would be good. After my parents died when I was 25, I had a wonderful couselor for 2 plus years.
I'll still seeing my psych- 6 years now. I'm so grateful to find such a gifted Dr. He put me on a 200 person trial study and I'm sleeping 10 hrs a night, and before I couldn't hardly sleep at all. I haven't been on anything stronger than vicodin. Because RSD affects the Limbic part of your brain-that affects anxiety-depression. I'm on an anti-anxiety meds called lorazepam. When I first got this I couldn't understand my anxiety and panic, as i never experienced that before. But RSD causes that. I'm on Cymbalta, an anti-depressant, which works on nerve pain. I had spasms, electric shocks jolts, thru my whole body, thru my brain, would raise my head off my pillow while sleeping. My Dr. raised my neurotin to 3200 mg. and they stopped. I did try Lyrica 400 mg. but gradually went off the anti-seizure meds and it is very seldom I have a spasm, nothing like before. This drug does cause weight gain. I'm now working out with 1 lb weights and other exercise to lose the weight and tone up again.
Since gradeschool,I was in track and field, thru middle school and high school. State medals and National. trained at U OF O Hayward Field while in High School. I still miss water skiing, snow skiing, used to play tennis 5=6 days a week. My daughter and I won a doubles tournament just before I got RSD. The US OPEN starts soon and we attended 12 days one year. I guess you could call us fanatics. One of our family trips was the Indian Wells, Ca. tennis tournament every year.
I know you have a chance at remission. Have you ever checked out HBOT -It's Hyperbaric Oxygen Chamber like the deep see divers go into. It promotes circulation. My Dr. has two clinics with HBOT in each of them.
He had another neurologist call him and asked my Dr. to treat his patient in the HBOT. She was driving on the freeway and was in an accident. A car hit the metal fence and one of the metal poles became a missle and went thru her windshield and impaled her thru the shoulder into the back of her seat. After her surgery, to help her regain range of motion, she was treated in the HBOT and after 6-7 treatments she was waving to the TV station camera crew with her arm after getting out of the HBOT.
I have full range of motion ,except my left hand, due to my Dr. My toes started curling up off the floor. He had me get in my pool (water needs to be 86 degrees) and while swimming curl my toes. In 4 months, my toes were touching the ground again. I never missed a day and am no grateful I can walk. YMCA I believe keep their pools warm, Swimming everyday is one of the best forms of therapy. Epsom Salt Bathes are good.
As a young man, it's natural to want to be like every one else and how you used to be. Please don't give up. Do as much research as you can. Please try the desenitizing-light massage.
I'm 62 and young at heart. I hope with all my heart you can find a way to go into remission. One of your new friends on NT, loretta

Hi Empty,

RSD pain was first 'discovered' and dx'd during the Civil War because of the burning nerve pain complained about by........amputees !

Like amputees with phantom limb pain, our nerves are misfiring and not reading the body's signals correctly.

Performing surgery to deliberatey cut more nerves in the hope it will fix the nervous system in someone that we already know has a screwed up nervous system seems foolhardy, at best.

You have my sympathies.......I can't imagine how much worse it is to deal with RSD as a young adult. Although at 45, I'm not quite dead yet ;), I am grateful that I got to enjoy high school and sports, college and partying, being physically active in my career of nursing, falling in love, getting married, and having kids..before my world fell apart with RSD.

It seems like fighting for Ketamine might be a good place to start.

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

I've rolled the roll
 

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.

Hi Empty
 

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

Thank you for your comment
 

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!

Nicely said, Finz! good advice to Empty. . .
 

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!! :D
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

Desperate
 

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

Rsd
 

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*

[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? :confused:
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':grouphug:

Amputation & RSD
 

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.

I've had the chop-chop
 

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.

Rsd
 

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.

Hi Emptydepth
 

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:hug:

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

I hope they'll hear you
 

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.

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.

It is an option
 

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?

Hi Mary
 

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:grouphug:

it really annoys me that people use this paper and leave out the bit at the end which states that many were satisfied with the outcome. In fact in the full paper it says 73% of upper and 67% of lower amputees were satisfied and it was higher in those who elected surgery

This is the 7th step I am trying to get the UK Government to undertake
I have done over 3000hrs internet research, with no medical training I had to approach it the only way I knew how, as a Police Officer with 8 ½ years experience who was lucky enough to only lose one case in court. Search everywhere I could, looking for clues and evidence follow every trail no matter where it lead and when it ended go back and follow another, piecing everything together into a case that would convince any judge and jury in the land. I have to ask you to trust me on this, because of the way my brain works now I didn’t realise the significance of some papers until months later or because of the mental and motor control problems I hadn’t saved them when I thought I had.
In the space of 7 days in Oct 2010 I came across papers by 3 US doctors working in separate Hospitals, unless as I suspect the 1st and 3rd are ex-US army there was no apparent connection between them. The first was a surgeon who stated that since he had started using a full sympathetic nerve block from 48hrs pre-op to 48hrs post-op not one of his amputees had suffered from Phantom Limb Pain. The second doctor described CRPS pain as Phantom Limb Pain with the limb still attached. The third stated that since he had started using continuous full sympathetic nerve blocks not one operation on a CRPS sufferer had caused a spread or flare.
In late 2011 I came across a paper detailing US army surgeons research into Phantom Limb Pain which was started in the early 2000’s. It stated that they had found a direct link between the incidence and severity of pre-op pain and the incidence and severity of Phantom Limb pain. They came to the conclusion that the initial pain was so bad that it burnt itself so deeply into the brain that the brain could not forget it, (exactly the same as CRPS does) if they could eliminate the pain prior to amputation there would be no phantom limb pain afterwards. How they got from there to the successful use of full sympathetic nerve blocks I have no idea.
I later came across posts by 6 CRPS sufferers who had amputations using this method while awake, It is suspected that general anaesthetics themselves can cause spreads, everyone stated that they had no phantom limb pain and no more CRPS symptoms, 2 had already had artificial limbs fitted and returned to work. Now no amputation should cure mental problems a fact confirmed by Professor Briggs at the RNOH. This has led me to the belief that the Americans have discovered a cure for CRPS but because of a lack of communication they have failed to recognise it yet.
I asked Professor Briggs to bring me in and give me a continuous Full Sympathetic Nerve Block for a period of 5 days, if at the end of that period the symptoms have completely disappeared then its likely we have a cure, obviously further trials would need to be undertaken. If the symptoms do not dissipate on the 6th day my arm would be amputated below the elbow while I am awake. Although this would not help me as it is in both legs as well I feel it is the only way to prove to our doctors that there is a safe way for them to operate on CRPS sufferers and a way to prevent anymore amputees developing phantom limb pain. I have given Professor Briggs a disclaimer absolving him of any blame should anything go wrong but cannot get him to make a decision, despite saying that I wanted no more appointments either a yes or no on the procedure I have been sent another appointment for 24th Jan next year, by that time I could well be one of the full body sufferers, this has now been put back to February.

I believe that the chance to find a cure or at the very least prevent any one in the future suffering from Phantom Limb Pain or an unnecessary spread of CRPS/RSD in this country is worth any risk to myself so I ask the DoH to arrange and fund this procedure as the UK’s first clinical trial into finding a cure and I am willing to sign any form of disclaimer your dept requires. The savings in the costs of appointments and medication for Phantom Limb Pain sufferers alone would eventually more than cover the cost of the procedure and if it is a cure the savings could be in the billions

Hi, I do know a person in one of my facebook groups that had both of his legs amputated. A form of treatment to try for your RSD that is not invasive is calmare therapy

Calmare Therapy for CRPS/RSD
 

Hello~ my 16 yo daughter has CRPS and has had it for over 3 years. We have done every treatment available, including Ketamine (both low and high dose) infusions (8 times), IVIG, high dose IV steriods, IV lidocaine, multiple injections, blocks, therapy with no positive outcome. She has become bed ridden, cannot go to school, cannot do school work, cannot enjoy her teenage years because the pain is so bad it cripples her. She has it in her right foot/ankle, her toes have become dystonic and she has lost the ROM in her ankle. I go into her room every night when she is in deep sleep and manipulate her foot/ankle/toes. About a year ago I found Calmare Therapy and was reluctanct to try it, but thought what the heck we have used everything else. We were very surprised wth the outcome. It truely does work, although not for long, but she had 3 months of life back! I have found that the person doing the therapy needs to be very experienced. The electrodes need to be in the right spot, and moved around to get the right "feeling" when the machine is turned on. We have been back to RI 3 times and are going back for our 4th session. Ketamine infusions interfere with the calmare signal, so that is why she is having a difficult time holding on to the non pain stimuli. The last time we were there the nurse that was administering it could not find the "right" place for the electrodes until our 4th day there. So please don't give up hope. Once you respond to Calmare you will always respond. This treatment is a miracle tx for us(a bit expensive) but worth it!Good Luck!!!

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

NO - STOP - Don't collect $200
 

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