Chronic Pain Support Group

I have extreme nerve pain in hip legs and feet. I don't know if amputation will stop all your nerve pain. I have just had the spinal cord stimulator trial put in and i am very happy with it. I definently want to do the permanent implant. It is very helpful for nerve pain and radiculitus/sciatica or neuropathy. Have you checked into that? I would recommend trying it before any amputation. I hope you find some relief.

I suffer from leg pain (and assorted other body parts) and at times it is unbearable. At one point a pair of drs were going to take the leg but they were a pair of quacks and by the time they had decided it would be a good thing it was too late as the problem had spread beyond that. One of the things I was told is they can inject curare into the nerve and kill the nerve. No nerve, no pain. Perhaps that might help without going to the extreme of an amputation.

Thank you both. I've tried SCS, no good at all.
The pain is constantly unbearable (doesn't come and go). I have one private doctor that says the sensory nerve can be killed (leaving the motor nerves in tact so I can still walk) but VA doc says he's never heard of it! I asked if he could FIND out and he picked up the phone, called someone, hung up and said THEY had never heard of it.

I've thought a lot about this, even getting rid of my whole lower half, but then I read and heard about phantom pain. It's basically that the limb is no longer there but the nerves above are still sending those pain messages downward, creating a similar, possibly more intense pain than before. I'm not sure this is a good option, but I'm not a doctor. I hope you are able to take at least some of your pain away soon! Have you tried Lyrica, Neurontin, Topomax, or any of the other nerve pain meds?

Much love and understanding,
Lisa

Thanks Lisa,
Yes, I've been max Gabapentin for a long time, trying neurontin and others in between, and various antidepressants to maximize the Gabapentin effect. Because I had a horribly wrong surgery done, it's hard to distinguish bone vs. nerve pain. That's the whole dilemna.
Now so bad I no longer walk at all - it feels just like I have crushed and broken feet. Toes are excruciating. Trying to hang in there but don't know why, honestly, guess it's my duty. Running out of steam. Thanks for sharing you had considered amputation -
appreciate the honesty.
Pam

I had my big toe amputated. And the phantom pain is bad. Amputation is a bad idea. It has a high possibility of causing more pain :-(

Plaxibo,
May I ask for what condition you got your toe amputated?
I never realized an amputation could cause "more pain" meaning not just the existing pain would live on, but you actually have MORE pain because of the amputation? Hmm . . that's news, and very valuable input.
Thank you!
Pam

Pam ~

My heart goes out to you Sweetie ~ (( )) hugs.

I know at one point my pain specialist told me that even if I were to have my leg amputated, the pain would likely continue because it is the nerves that are causing the problem and those do not go away with an amputation..thus the Phantom Pains everyone hears about!

My husband had his right leg amputated six inches below the knee in April of 1984 when he was 22 years old. It was a result of the car accident we were in, which was the beginning of my medical problems as well. The way the doctors explained it to us is to think of the nerves going from the brain to the feet as a telephone line going from pole to pole in your neighborhood. That line 'feeds' into a lot of the homes in your area but if one of the homes on your block were to disconnect their phone, the line does not know the difference. It still keeps sending signals out to the other pole not realizing someone along the line (in this case his lower leg) is off the system.

He still experiences Charley Horses in his leg he does not have, when you experience sudden 'kinks' in your toes, he still receives those as well because the brain does not know his 'telephone' has been disconnected! He has a spot on his stump that he rubs, (sometimes he will wake in the night grabbing his leg from a Charley Horse and I will have to massage his stump for him) and it makes it stop. He is fortunate in that his Phantom Pains are not really 'pains' more annoyances but there are people with amputations that get severe pain in their limbs. Generally, these are people that have lost their limb due to trauma, a soldier having his leg blown off in war that type of thing. My husband's leg was surgically amputated almost a year after our accident thus the removal was not considered 'traumatic'.

Their is a group that posts on this website that my husband belongs to, it is the Amputee Support Group. Maybe you could post there and have some of your questions and concerns addressed, I know they are a great bunch of people over there!

Best of luck Pam!

Crafty

Crafty,
Thank you for the detailed post. Your explanation was very helpful. I did look for the amputee group but was unable to find it. I'll give it another try. Do you or your husband happen to know if someone with both limbs cut off below the knee can walk with prosthetics? Thanks again.

Pam

Hello All ~

Pam just type in 'Amputee Support Group' in the search area and it will take you to a board with various posts, click one that has the word Amputee in green and it will take you to the group.

The answer to your question is "Yes" a person can walk with prosthetics if both legs are amputated below the knee! The rehab time is longer then it would be for one amputation but it is possible.

You do have to understand Pam, this is a major decision you are considering and you need to gather as much information as you possibly can. It is a lengthy process and everyone's outcome is different. My husband had an ulcer in the back of his ankle from a bone broken in the accident which would not heal. He was hospitalized, bedridden and had continuous IV antibiotics trying to save his leg for two months. Then they gave him a choice of either having his leg amputated or enduring months and possibly years of surgery/skin grafts etc. After careful consideration, he opted to get on with his life and have the amputation. My point being, he did not suffer CP before he had surgery, in fact his leg did not hurt at all so he was not coming from a 'Cannot take one more day of pain' stand point.

He was as I stated before, 22 years old at the time, the doctor that performed the surgery was at that time one of the leading Orthopedic surgeons in Canada, and he used what was then a new technique for rehab immediately following Hubby's surgery. I also believe in my heart that if not for his personality, he would not do as well as he does with his leg! He tends to be stubborn, he is a very determined individual and once he sets his mind on a goal he is not easily shifted. Keeping in mind that everyone has a different outcome, he is able to; golf, hunt, fish, play baseball, he played on three hockey teams last winter, he coaches our son's one soccer team and is the assistant coach on the other and does just about anything he wants sometimes with modification sometimes without.

I apologize for being 'wordy' but I like to help where I can. I hope some of this information has helped.

Take Care
Crafty