Phantom leg pain

[val]

Help I’ve had phantom leg pain since I had my operation to remove my leg into my pelvis that was 3 months ago I am in extreme pain I wondered if anybody can help or just have the same to know I’m not alone will help

[stonecutter]

Hi Val,

Welcome to the forums.

In the several weeks after surgery, for me anyway is when the phantom pains were the worst. Aside from the original amputation of my leg, I had a revision surgery 18 years later in 2012, which involved re-amputation for a few inches. Both times for about 8-12 weeks the phantom pains were fairly intense and subsided over a few months.

The best way this was explained to me was in 1994 while still in acute care after my ordeal. I had a wicked case of insomnia for several months after my accident. The night nurse sat with me one night. It was about 2 or 3 in the morning and I was struggling with acceptance of my new situation and the phantom pains themselves. I wanted to understand why my brain was torturing me as the location of the pain was about 14" past where my body physically ended.

She said something to the effect of: "When we are born, part of the design of the brain involves a map of the body. Your brain quickly learns how each part shown on the map correlates to which body part. When we lose one of those parts, there's no way to erase it off the map (and this made me laugh) without sending someone in there to scrub it off."

"Phantom pains are a result of the brain trying to send a signal to that area on the map to see if it can figure out why that area of the body isn't reporting in..."

It made sense, and I understood it better, but didn't make my phantom pain go away that quickly. Over time, they subsided, but I still have days when they can be fairly debilitating. What works for me - and might not for everyone, is showing my brain where the new 'border on the map' is by massaging the end of my stump, or using a TENS machine to fire the nerves in my stump - very low strength, and the patterning has to be just right. The wrong settings can make them worse!

They are the worst for me when I try to sleep. When I am having a good battle with phantom pains, sleep doesn't come easy and that means it doesn't come easy for my wife either. I will take myself to the couch, throw on netflix and squirm out there to leave her be!

Some folks go on a drug called Gabapentin - a drug that can interrupt the process of phantom pain. I have never been on it, but I'm sure others who belong to this forum have and may chime in (please chime in!) to tell you about it.

Info on Gabapentin here: www.webmd.com/drugs/2/drug-14208-8217/gabapentin-oral/gabapentin-oral/details

We have had members on this forum actually comment that they've never had phantom pain whatsoever, and didn't even believe that it's a real thing! I wish that were the case for the rest of us who feel it!

One thing I would recommend, (although I'm sure you have already done it) is to be sure that the pain you are experiencing is indeed phantom pain and that there's not something else going on. Your surgery was pretty invasive compared to mine - it couldn't hurt to just be sure that there's not something else happening.

I hope you find some relief soon. Suffering in pain isn't sustainable for too terribly long. The problem is that it also takes a lot of self-advocacy to get help for it.

Please let us know how we can help.

[42oclock]

My orthotist told me a couple of things after my amputation; when amputation happens the cut nerves shrivel back. They also start to regrow (about 3 mm average month)in the first six months. The growing nerves look for reciptors to connect to. A lot of times the reciptors do not make the correct connection. An example; some nerves can connect to heat or cold reciptors. What helped me was having a long mirror (cheap at walmart) when doing my physio exercises in the first year. I placed the mirror between my regular limb and the residual limb. As I did my exercises I watched the reflextion in the mirror. According to my orthotist this tricks the brain into thinking that 'all is well'. For me the nerve pain subsided tremendously. Totally aggree with Trevor about making sure to talk to your health care professional to make sure its not something else. Late fall 2022 I ended up with shingles and ended up on Gabapentin for a few days because it really brought out the phantom energy. Read 'phantom energy' in a article about amputees. Its not as ominous as 'pain'.

[rg8]

Hi, Val! I'm a right BKA, about 2 years into this new "experience". As 42oclock mentioned above, Phantom pain is as he described, mirror therapy works really well. It is used at Walter Reed Hospital for all the amputees from the war. There is a fairly new procedure TNR ( targeted nerve reimplantation)- it is fairly standard of care in Canada, Europe and Australia for all amputees. The severed nerves are sutured to nearby muscles and it trick the brain, it is about 80-90% effective. There is a group of surgeons at the University of Michigan that have come up with a similar procedure only slightly more intricate RPNI ( regenerative peripheral nerve interface). They had to stop the study because the 1/2 of patients getting the procedure had no phantom pain while the other 1/2 did. So these surgeons offered all those patients a redo procedure at no cost to the patient. My advice is for you to talk to your surgeon, if he is not familiar with either of these procedures, he should be able to refer you to someone that does. I do not know where you live, but I know for a fact that the Boston area has several excellent surgeons doing TNR. Of course, this means undergoing another surgical procedure, recovery and all that comes after that, so talk to professionals, start with non-invasive things like mirror therapy, etc. One component which I didn't mention is that there is a very strong psychological factor that acts like a gateway somehow. I know of several other amputees, myself included, who had no phantom limb pain for whatever reason,in all of our experiences there were some stress related factors which brought the pain to the surface. In my case, once the stress was removed, my phantom limb pain went away. I hope this can be of help. Let me know.