Loosing my battle with CRPS?
 

It has been 15yrs since my initial accident. It only took the V.A. doctors about 14 1/2yrs to diagnose me with CRPS. They finally snet me to a pain management center who claim to be one of the best with treating CRPS. A plan of action was set and everything was a go and I was on board. However two months later everything has stalled and they are unsure what the next step they should take is going to be. I have been on medications from the start, and they have tried the nerve blocks with no success. I am really considering amputaion to get rid of the nightmare, am I wrong in thnking this way? Or do I stay the course of pain and misery and medication? I am lost and lossing hope and so is my family who is also struggling in this nightmare with me.

I'm sorry to hear of your pain and frustrations.... :(

I have been dealing with this MONSTER far less than you... me = 7yrs.

I have like you, considered amputation... actually I have BEGGED and PLEADED with the doctors to amputate. I was told NO!!

Neurologists have told me that the limb would be gone but the pain would remain as this is really not a problem in the limb itself but in the sympathetic nervous system and the brain. The limbs affected are the place where the symptoms and affects of this monster present.

While I don't know the medications or other things that you have tried... I sincerely understand where you are... Medicines and/or therapies either don't work or they do but not as good as we would like and then there are the side effects. All of this is VERY frustrating!!!!

One would think that something as PAINFUL as RSD/CRPS, that was first diagnosed during the Civil War... would have a cure fould by now...yet, there is very little that can be done in the big scheme of things.

Ever feel like a guinea pig being tested on... kind of a let's try this or this or this..... or so on????

I am seeing a new Neurologist (2 visits so far) and from what he has told me there are things for RSD/CRPS that are being researched and either are just starting the trial process or will be soon.
(As these are new things and not made public yet he was unable to tell me what was being examined, tested, researched, as of yet.)

Please consider all factors before deciding on amputation....
Wishing you all the best.
:hug: Gentle Hug...
Abbie

I'm so sorry that the V.A. has let you down so badly. That really stinks.

As Abby has told you, amputation is not reputed to be the answer. There is a search feature on this board, you can use it to go back and read many threads about the subject.

Ketamine infusions have helped me get some of my life back. Ask your pain management doc about them.

Please take care, and good luck, XOXOX Sandy

Abaski said what I wanted to say better than I could have.....your limb isn't the problem. Your nervous system is permanently screwed up. Amputation won't fix that and could easily make the pain even worse.

I'm so sorry to hear about your pain and suffering, Navysniper7 :hug:!

I have had RSD/CRPS since I was 12 years old (i'm now 15). It started in my left leg and has since spread to both arms and my back. Like you, I had a nerve block but it didn't help and made things a LOT worse. Before I had the block, I could walk, albeit very slowly and on crutches. After the block, I couldn't walk as I had lost all coordination in my limbs. I was left wheelchair bound for 13 months and had to go on an intense PT course to learn how to walk again.

As well as the RSD, I have other conditions including Hypermobility Syndrome (my joints bend further than a 'normal' persons), Dystonia (this is a complication of the RSD and my left leg is permanently rotated out to the side), Mycolonic Spasms (my leg shakes uncontrolabley), Fibromyalgia and have recently developed Syncope (I pass out on average 25 times a day :(!)

Like you, in desperation, I begged my doctors and parents to amputate my leg. As the others have said, I was told that it wouldn't help as the problem wasn't in the limb itself but in the nervous system. I was told that i'd still have pain even after amputation and that although it was used centeries ago, it isn't considered a treatment for RSD anymore.

I know how scary it is dealing with all of this so if you ever want to talk, I am here for you! I have lost most of my friends, can't go to school (i'm home tutored) and not many of my family members except mum understand what I am going through which really hurts. Thankfully I have a great boyfriend who I have been with for 7 months who is really supportive and has health issues of his own so that has helped but it is still really lonely and depressing at times.

Please don't give up hope (I know it's easier said than done trust me!)! As the others have said though, medical research is advancing into RSD even though it might not feel like it at times. You will find a medication / treatment that will help you at least somewhat. Yes it will be a struggle and yes there will be a lot of ups and downs but it will be worth it in the end!

Take care and i'm here for you!
Alison x

It takes time to find the right mix of medications. Try to deal with the symptoms one at a time until they are controllable. This means you need to learn your triggers as well and avoid them. Try to start medications one at a time when you can so you know which one is causing the bad side effects.

Hang in there. Amputation is a desparation play. If it worked it would be the first thing most of us would do. It has only about a 10% success rate and most cases are made worse.

Hi I am sorry you are in such a bad place. Like you and others here I too at one time asked about amputation but then there would be phantom pain. Also I think you are at risk of damaging other nerves. I too have had little relief from meds and actually treatments like nerve blocks increased my pain. I agree with others about other treatments such as a temp scs, ketamine or pump. Have you went for another opinion or approach with a pain doc who deals with rsd? I would suggest that. I know when things are so bad pain wise one just wants relief but I feel it is very important to really research the procedure or what is suggested. Unfortunatly not all docs are in it for our best interest and so why one also has to do there own research.Hang in there and hope you feel better.

8 Years & Still Fighting
 

I was diagnosed with RSD/CRPS 8 years ago. I have been to doctor after doctor and all have agreed: Amputation will do no good as the pain is not actually in the limb where you think you feel it; so I STRONGLY encourage you not to even consider amputation.
It is hard, very hard, but if you can find a doctor who will work with you, y'all can come up with a combination of drugs that will help. It may take some time, and they may change from time to time, but there are drugs out there that do work. For 1.5 years Lyrica worked great for me, then all of a sudden it stopped helping. I am not back on Ms Contin (Long Acting Morphine) and Morphine Immediate Release for break through. Though it isn't perfect, it works where I can have a half-way normal life. Don't get me wrong. I take about 6 other drugs in my "cocktail" - SEROQUEL being the newest one they added......and with these, I was confident enough to have a three level, 360 degree cervical spinal fusion surgery. I knew going into the surgery that my CRPS could flair to such a degree that I could be institutionalized, but I was willing to risk it. It has been 6 months and I am no worse than I was to begin with. EVERYONE warned me not to have the surgery...as the surgeon is operating right where the nerve center is and it could cause all kinds of problems...But I refuse to let this Horrible Condition Control 100% of my life. It controls enough of it as it is.
My advice: Find a physician who will work with you with the medications. It will take several probabably, but make sure he gives you one that helps you get at least 8 hours of sleep per night because, regardless of whether you needed it before or not, you need sleep now. Combine the sleep medication with some strong pain medications and go from there.
NOW YOUR PART: As hard as it is, you need exercise. Even if it is just a small amount. I promise you it will help if you will keep it up. It is hard and many days I would rather die than even think of exercising. But on those days, I wait until I feel as good as I think it is going to get and then I walk. Maybe just 50 yards, maybe more maybe less. Sometimes I walk in my house just around all the rooms and hallways, but I try and that makes a ton of difference. Just try it. Don't do anything drastic. There is a doctor and there are medications that will help you. I know this....but I also know it may not come quickly or easily. I spent 3 weeks in the hospital just exercising my wrist because I had lost all use of my hand/fingers. BUT, today I type this email with both hands, with all 10 fingers. There is help, just fight for it.
I am not on this sight much, but I will be more than happy to give any advice I can. I went through an entire round of chemotherapy for cancer while I have had RSD. I survived CHEMO while suffering from RSD/CRPS. You can do it.

Amputation will not stop the pain
 

The only reasons a body part should be chopped off is when you're battling chronic infections that will end you life if you don't proceed with this horrific mutilation.

After battling infections and blood clots for years I was scheduled for a bilateral above the knee amputation. The day before surgery I backed out and only allowed the left leg to be taken. The right leg is still black all the way to the knee and necrotic as all get out and still needs to go - but I'm not giving it up till I have no other choice, because I to thought that at least with the left leg gone the pain would go with it. I couldn't have been more wrong. In fact I've found exactly the opposite.

5 to 10 years ago there was a small group of doctors who were actually believing pain could be chopped off. Problem was, they were not looking at the actual location where RSD is the root of the problem hence the results were horrible. The only thing that was gained by my radical pedicure is that I can't get infections in real estate I don't own anymore. Meanwhile I'm more of a gimp than ever before. Add to that more pain and even new types of shocking pain (I mean literal shocks that do blow me out of my wheelchairs), this has been no easy ride since amputations always come with the price of less mobility.

Unless you're one of the few who actually think you'll be able to handle a prosthesis afterward I'd like to know what's gained? A fake leg will still require a very secure attachment that will apply even more pressure than you're experiencing now. Unless you can cut way high enough above the damaged area and you're 100% positive that the RSD and associated damage will never spread further, then the chances of a fake leg might just be a dream more than a reality. Shoot, just wearing the socks to shape my stump so I'd have the right shape put me on the ceiling hence I stopped using them after my now tiny upper bone/stump finally stopped wobbling around in my very short leg while it healed up inside.

While I understand to my deepest core the desperation you feel so you'd finally get rid of the pain once and for all, this only proves that your pain isn't being managed properly. My betting odds is that very few doctors and even less insurance companies will now allow this procedure/option no matter how badly you want it since there just isn't the proof it really helps post chop. I understand why you're willing to do it, but the sad fact is the odds of it working are slim at best and worse yet I know firsthand like in my case actually make things worse. Now that really scares me.

Please take care and let me know if I can help. Bob.

Loosing Battle
 

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 :hug:

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

I have been requesting amputation because of RSD
 

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

An interesting gamble if you ask me
 

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

Unless I've misunderstood others
 

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

Spread
 

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.

Just want to say thanks and good luck
 

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:hug:

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.

i have had since 1995
 

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

Amputation does not cut away the problem
 

Anyone who believes you can chop off the RSD problem is going to be sadly disappointed when they wake up after surgery only to find out they're in no better shape than before. As an amputee from the ravages of RSD, the only reason any responsible doctor will ever remove a limb is when the patient is dealing with life threatening and chronic infections that necessitate this type of radical solution. By the way, getting insurance to pay for it is another hurdle and while the idea might sound right, the reality is it doesn't work.

Pain and desperation makes everyone who's in the upper range of severe RSD damage consider this option but the sad fact is amputation just doesn't make the problem go away. In fact it often actually makes it worse across the board. The only good thing that came out of my first amputation (we still need to take the other leg) is that we have less real estate to be infected but be it infections, blood clots or pain, these problems will still exist even after a person has whatever body part removed.

Unless you're dealing with narcotic tissue where the circulation system has shut down, the best solution you have right now for managing the ravaging effects of RSD is through better pain management and therapy that will hopefully help you get the most out of whatever little you still have. While it breaks my heart to read about anyone who's actually desperate enough to live with the effects of living with less of your body just so the problems will somehow ease up, I know first hand that you'd only be creating new and in all likelihood more problems than you have now.

Be up front with your trusted doctor(s) over how you're feeling and how desperate you're feeling. Only then will the doctors understand that you're willing to do whatever it takes just so you can find a bit better quality in daily life. Wishing you only the best, Bob.

Amputation inevitable?
 

Bob,
I have been following your posts and want to express my appreciate with you sharing your experiences and particularily your amputation. My husbands foot and leg, to the knee, looks very similar to yours (the picture of your left leg before amputation) however his leg is not as dark. He has had RSD since 2002 and is often dealing with a minor scrape or nick that oozes and grows in size resulting in an infection. Recently a minor nick on the big toe caused a big blister to form which explains the bandaged toe on the attached picture. It took 1.5 years for RSD to be diagnosed and a couple years after that we thought about amputation however quickly realized this was not an option and to keep his leg intact for as long as possible was the best scenero. Its been almost 10 years of managing pain, dealing with weeping skin and infections. He is taking oxycontin currently for pain management and is coping quite well (his laid back attitude really helps). I can't help but wonder how much longer his leg will "last" before all circulation is lost and amputation mandatory.
I truly hope you continue to be as healthy as possible and that life is fulfilling. Would love to chat more. Take care. Tammy and Ron:)

Those photos look so painful :grouphug:


Has anyone suggested low level laser therapy or even LED light therapy?
Both of these can be used without having to touch the skin - but someone would have to hold the units or place it on a stand of some sort.

LLLT treatments can be as short as 20 secs per location - LED takes about 20 minutes per location

If nothing else it should help the wounds heal much faster, but it just might help with some of the swelling & pain from that.

some basic info sites for LLLT & LED
http://www.google.com/#hl=en&cp=19&g...w=1360&bih=662

http://www.google.com/#hl=en&cp=4&gs...w=1360&bih=662

other things that have been talked of on the forum-
Hyperbaric oxygen therapy?? HBO
Nutrition & supplements ? grape seed extract/pycnogenol = antioxidants
I also like Vit C & MSM for whole body healing and wellness along with a good multiple.
Since you are so far north a Vitamin D supplement is a good idea too.
We have a forum for - Vitamins, Nutrients, Herbs and Supplements- it will have more specifics for those things.
http://neurotalk.psychcentral.com/forum49.html