[RSDSpouse]

Hi,
My husband got RSD in his left foot in 2011, nothing has helped with his pain. He has tried everything. His left foot can not be touched at all, he can not have water drip on it from the shower. It gets bumped often which obviously causes more pain. The doctor is not saying that amputation will take away his pain, just that amputation will make it so he doesn't get further pain by bumping it, swelling from keeping foot down, and he is hoping maybe he could use a prosthetic leg, if the pain is not in his stump after amputation. I originally did not want this, but after seeing the doctor again, I feel like this might be the only option. He hates his life. He does nothing all day except lie down and keep his foot up and pop pain pills. I am lost and do not know what to do anymore.

[Jomar]

We have past threads on amputation w/ RSD, phantom pain may be just as bad..
here is the search link to find those postings..
http://neurotalk.psychcentral.com/search.php

Has he been evaluated for depression?
Often treatment for depression also can help with pain levels.

Was there a specific cause that set it off?

Long ago one member had a dx of RSD for quite awhile and for some reason she went to a chiropractor , who found a pinched nerve in her foot!
Had treatment to fix/adjust and was fine..

What has been tried- standard meds and PT? any blocks tried?
any alternative things- acupuncture, hypnosis, detox, low level laser, naturopathy

[LIT LOVE]

Originally Posted by RSDSpouse

Hi,
My husband got RSD in his left foot in 2011, nothing has helped with his pain. He has tried everything. His left foot can not be touched at all, he can not have water drip on it from the shower. It gets bumped often which obviously causes more pain. The doctor is not saying that amputation will take away his pain, just that amputation will make it so he doesn't get further pain by bumping it, swelling from keeping foot down, and he is hoping maybe he could use a prosthetic leg, if the pain is not in his stump after amputation. I originally did not want this, but after seeing the doctor again, I feel like this might be the only option. He hates his life. He does nothing all day except lie down and keep his foot up and pop pain pills. I am lost and do not know what to do anymore.

Time to get him to a new RSD/CRPS specialist! Unless there is some other factor you haven't mentioned, amputation should not be considered. There was a point that I used to fantasize about amputation, but I knew it wasn't an option from my research at the time.

http://www.rsdhope.org/crps-stages.html

"Please do not allow any Doctor to amputate the affected limb unless it is a medical necessity, such as due to gangrene for instance. While it is infrequent, amputations in an effort to eliminate the CRPS pain are still being done. This is typically ineffective and extremely destructive; physically and mentally. It not only does not work but also, in most cases, will exacerbate the CRPS/RSDS and increase the spread rate."

He might need to switch to taking baths instead of taking showers. Add some Epson salts and he might get some pain relief! I sat on the floor of the shower for YEARS to put as much distance between me and the showerhead as possible when bathing wasn't an option. When I moved a few years ago I switched out the showerhead and it made a HUGE difference.

A few years in to the process might seem like a lifetime due to his suffering, but it's really a short time. Is he seeing a pain psychologist? Has he tried warm water pt? What about an outpatient Ketamine infusion? What about HBOT? How does he respond to Lidocaine patches? Has he tried desensitization? And there is a much more extensive list of things to try, but that's where I'd begin. (I wouldn't trust ANYTHING his doctor has done at this point, btw.)

Opiates are a reasonable option for some of us. I highly doubt he has figured out the best combo for maximum pain relief and minimum side effects, after so short a time. Is he on a time released opiate for starters?

He shouldn't be bumped all that often. Where is he and what is he doing when that happens?

You both need to understand that his foot is in all likelihood is not the problem (although there can still be underlying structural problems sometimes) but rather in his sympathetic system. This is why spread is so common! One of my doctors explained years ago that when they autopsy RSD/CRPS patients that had had the disorder for a few years, they can see the changes in the spinal column. A traumatic surgery like amputation could spread it to his entire body, including his internal organs.

Don't give up hope. Finding a good doctor is often half the battle.

[birchlake]

Please, please get many opinions on this. How much experience has this doctor had with CRPS? That question needs to be asked point blank to any professional your husband is seeing. This condition is one of the most misunderstood conditions of the human body, even by many doctors.

My research has consistently shown that amputation is absolutely not a good decision for anyone with CRPS. I agree with LIT LOVE that the problem with your husband's CRPS is not in his foot, it's in his nervous system. Removing the foot would likely not resolve anything.

I understand that you are at your wits end with this condition (many of us are), and that amputation might "seem" to make some common sense, but if he goes through with the amputation and the condition is not better and possibly worse including spread, you'd both be very disappointed....

I agree with the others that if you could list all treatments that have been explored, we might be able to make some other suggestions. CRPS is best treated in a multi-disciplinary strategy, using not only mainstream medical, but complementary and alternative treatments as well.

[Kitt]

Welcome RSDSpouse.

[RSDSpouse]

Originally Posted by Jo*mar

We have past threads on amputation w/ RSD, phantom pain may be just as bad..
here is the search link to find those postings..


Has he been evaluated for depression?
Often treatment for depression also can help with pain levels.

Was there a specific cause that set it off?

Long ago one member had a dx of RSD for quite awhile and for some reason she went to a chiropractor , who found a pinched nerve in her foot!
Had treatment to fix/adjust and was fine..

What has been tried- standard meds and PT? any blocks tried?
any alternative things- acupuncture, hypnosis, detox, low level laser, naturopathy

Yes he has been evaluated for depression and is on medication now.

He had about 75 pounds of steel fall on his foot at work, within a few days he ended up having a blood clot in his foot so they had to cut it open and remove it. He had a large gap in his foot that was packed with gauze, it eventually closed up but he still was in pain. That is when his family doctor said he might have RSD.

He has had everything you can image, sympathetic blocks, ketamine infusions, mirror therapy, spinal cord stimulator trial, physical therapy, hypnosis, acupuncture, quit smoking, the list really goes on and on, and nothing relieved any pain AT ALL. He had to stop Physical therapy because it ended up making him be in more pain for the rest of the day and even into the next days. He did it for about year and half but it made his quality of life worse.

He can not go to a chiropractor because they would not be able to touch his foot, he can not even submerse his foot in a bath, it is too painful.

His doctor is a pain specialist and this is all he does. He has been doing this a long time and has many RSD patients. He also told us that he has only mentioned this one other time to a patient. He said that my husband is an extreme case because nothing helps, the only thing that helps is the pain medication he is on. He has tried so many different medications from Lyrica, Cymbalta, gabapentin, methadone, oxycoden, but the only thing that helps is hydromorph contin.

Like I stated before this is not to help with the pain, it is to stop pain from happening when it gets bumped, and he also can not put any weight on his foot and has to use crutches and a scooter.

We are in Canada we can not just up and go see another doctor it doesn't work like that. He also got hurt at work so he needs to go through WSIB.

[RSDSpouse]

Originally Posted by LIT LOVE

Time to get him to a new RSD/CRPS specialist! Unless there is some other factor you haven't mentioned, amputation should not be considered. There was a point that I used to fantasize about amputation, but I knew it wasn't an option from my research at the time.



"Please do not allow any Doctor to amputate the affected limb unless it is a medical necessity, such as due to gangrene for instance. While it is infrequent, amputations in an effort to eliminate the CRPS pain are still being done. This is typically ineffective and extremely destructive; physically and mentally. It not only does not work but also, in most cases, will exacerbate the CRPS/RSDS and increase the spread rate."

He might need to switch to taking baths instead of taking showers. Add some Epson salts and he might get some pain relief! I sat on the floor of the shower for YEARS to put as much distance between me and the showerhead as possible when bathing wasn't an option. When I moved a few years ago I switched out the showerhead and it made a HUGE difference.

A few years in to the process might seem like a lifetime due to his suffering, but it's really a short time. Is he seeing a pain psychologist? Has he tried warm water pt? What about an outpatient Ketamine infusion? What about HBOT? How does he respond to Lidocaine patches? Has he tried desensitization? And there is a much more extensive list of things to try, but that's where I'd begin. (I wouldn't trust ANYTHING his doctor has done at this point, btw.)

Opiates are a reasonable option for some of us. I highly doubt he has figured out the best combo for maximum pain relief and minimum side effects, after so short a time. Is he on a time released opiate for starters?

He shouldn't be bumped all that often. Where is he and what is he doing when that happens?

You both need to understand that his foot is in all likelihood is not the problem (although there can still be underlying structural problems sometimes) but rather in his sympathetic system. This is why spread is so common! One of my doctors explained years ago that when they autopsy RSD/CRPS patients that had had the disorder for a few years, they can see the changes in the spinal column. A traumatic surgery like amputation could spread it to his entire body, including his internal organs.

Don't give up hope. Finding a good doctor is often half the battle.

Yes he has tried all of the things you have mentioned. He can not do the warm pt due to the fact his foot can not go in water it is too painful and cause much much more pain.

His meds are time released 3 a day and 2 quick acting for breakthrough pain

He is bumped because he bangs into things, drop things, we also have 2 kids 5 and 8 so it happens, and out one son who is 8 is autistic so he doesn't always remember to be gentle around dad.

[RSDSpouse]

Originally Posted by Kitt

Welcome RSDSpouse.

Thank you Kitt! I appreciate that.

[Hopeless]

Dear RSD spouse,

Oh, how my heart breaks for both you and your husband. What an awful place to be in your life presently. I just have a few comments to add to the thread.

I can appreciate the "idea" of amputation. I reached a point where my pain was so intense and unrelenting I just wanted to take a machete and amputate my leg myself. I finally found a pain mgt. doctor and after trying most everything available, together we found a treatment that is helping to manage the pain. What is helping me is not important since every patient is different. What IS important is the permanence and finality of having a body part amputated. Once it is gone, it is gone forever. And what happens if such an extreme measure does NOT help? It is too late to change your mind. It is not something "to try" and see if it works.

I must agree with all the posters that strongly advise AGAINST amputation. It should be done only when medically necessary like Lit Love mentioned.

I don't have any answers or suggestions to offer as a solution to the dilemma, but I do not think amputation is the solution. Just my opinion.

[LIT LOVE]

Originally Posted by RSDSpouse

Yes he has tried all of the things you have mentioned. He can not do the warm pt due to the fact his foot can not go in water it is too painful and cause much much more pain.

His meds are time released 3 a day and 2 quick acting for breakthrough pain

He is bumped because he bangs into things, drop things, we also have 2 kids 5 and 8 so it happens, and out one son who is 8 is autistic so he doesn't always remember to be gentle around dad.

If he is on a high quality 24 hour time release opiate, taking a half dosage every 12 hours can insure a continuous, consistent release. Taking it 3 times a day would be unnecessary and pharmacies and insurance companies will not fill/approve more than 2 per day.

Are you saying he has two types of immediate release meds? Or can take 2 per day?

Are there any residential pain programs available at any of the hospitals in Canada?

How many HBOT sessions did he try? Was it at the facility in British Columbia that is supposed to have developed a successful protocol?

How many Ketamine Infusions did he try? He had no response?

How warm was the water in pt? The reason it (usually)works for those of us with allodynia is because it removes stimuli, changes in air temp, breezes, etc. If the water isn't warm enough, it will cause new pain though.

When he underwent blocks, he had no pain relief whatsoever? Did his eye droop?

Has he had any mirroring of symptoms in his other foot or spread to new areas?