The Mayo Clinic defines phantom pain as “pain that feels like it’s coming from a body part that’s no longer there”. It can come in the form of pain or sensations. Phantom pain is when you feel pain in a limb that is no longer there, while a phantom sensation is feeling that the limb is still there but not experiencing pain from it. I was forewarned about phantom pain from my orthopedic surgeon, a pain management doctor and other amputees, yet I could honestly only imagine what phantom pain was from an experience I would have after each of my previous 6 surgeries. In the days after each of my other surgeries I would wake up around the time pain meds were due. When I would wake up, I’d have the sensation that my affected leg would be resting in a certain position. When I took a look though, the leg would actually be in a completely different position. I always found this to be such an odd feeling. So when I thought about phantom pain, I could believe it existed due to this feeling I would get after surgeries. I also thought that would be what phantom pain would feel like. I was not completely wrong, but there is just so much more to it.

Honestly, I am not sure I could possibly explain what phantom pain feels like, because I don’t think anyone could possibly understand how it feels until they experience it. What I can say is that it definitely exists and I’ve felt it from the time the nerve block wore off the very day of the amputation surgery. As I sit here writing, I can feel my missing lower left leg, but not as I did most of my life. I feel the foot and ankle, but it is heavy and it feels as if there is a force pushing against it. The feeling is so strong that if I didn’t know better I would absolutely swear my foot was still here.

The most common phantom pain I experience is a burning pain in my missing foot. The following are some of the more bizarre phantom pain/sensations that I endure.

My Top 6 Weirdest Phantom Pain/Sensations

1. I have yet to feel pain or anything at the end of the stump. As far as my brain is concerned, the end of my stump is my foot. All pain or sensation feels like they are on the bottom of the missing foot. When the staples were being removed my eyes were watching them coming out of the stump, but my brain was feeling them coming out of my foot.

2. The first time I walked on my crutches in the hospital my phantom foot kept dragging on the floor. Even now, here and there, my phantom foot drops to the floor and tries to trip me as I am walking.

3. The stump shrinker is a tight-fitting compression garment that is worn over the stump. While wearing it I feel like I have a tightly-fitted cast on my lower leg. I can even feel my toes sticking out the end of the cast.

4. For about a week I suffered a lot of nerve pain. The nerve pain felt like the arch of my foot was being attacked by hundreds of electrical shocks.

5. Every morning when I wake up I have a tough time moving my leg. It is the feeling you might have after sitting on your legs for a while. When you go to move your leg it is heavy and numb before the pins and needles begin. That numb feeling before the pins and needles start is how my lower missing leg feels, but the pins and needles never come. The numb phantom leg remains until after I shower and start moving about the house.

6. My missing big toe certainly doesn’t feel like it is missing. It is constantly getting stuck, bent down. No matter what I do I cannot get it to unstick. I have even, without thinking, reached down to fix it many times, only to have my hand discover that there is nothing there.

Luckily I have found a few methods to help.

The phantom pain is a brain thing. The nerves are still sending signals to the brain from the missing limb. The best way I have found to help with the phantom pain is to keep my mind off the amputation. When my mind is occupied on something other than my leg I don’t feel the phantom pain.

Keeping active is also a great way to combat the phantom pain. When I am up and about, obviously on my crutches, I am not bothered by the phantom pain. A workout at the gym, I feel no phantom pain. Climb on my tractor and suck up the leaves, I feel no phantom pain. Sit on the couch doing nothing, I am hammered with phantom pain.

Tactile therapy and massage can also help. This helps to focus the mind on the part of the leg that is still there. I use a variety of items that have different textures. I might start by tapping my thigh with a pen or empty paper towel roll, then brushing the thigh with a hairbrush. I like to end by buffing my thigh with the soft stuffed hippo my daughter brought me while I was in the hospital. I also gently massage the stump for a few minutes.

The tactile therapy and massaging I do in the evening when relaxing before bed. That is when the phantom pain is acting up the worst. Once I am done, I ice the stump for about a half hour, then follow with a half hour of heat. I found a great product called the polar sleeve. The Polar Sleeve was designed for amputees and has two pockets inside a sleeve that fits around the stump, with two Velcro straps holding it in place. The pockets hold reusable cold/hot packets. The great thing about the polar sleeve is that it gives either cold or hot therapy around the entire stump. The packets are held in place, never sliding off, and if you need to get up for something, it goes with you.

Most nights after my routine of tricks ending with the icing/heating, shortly after I get in bed the phantom pain calms down and off I go to sleep.

My phantom pain is completely expected and normal for where I am in the amputation. I am anticipating that in a few months it will dissipate. However, it is reasonable that amputees will always experience some degree of phantom pain, and there have even been amputees that still report being able to wiggle the toes of their amputated leg decades later. So I have looked into trying some methods that have been successful in reducing phantom pain. Mirror Therapy seems to have had some good success and I am giving it a try.

Mirror Therapy

Once again there are a few theories on why amputees have phantom pain. It is believed that the brain and spine receive mixed signals because after the limb has been amputated the brain loses signals to the missing limb. The Mirror Therepy is a way of tricking the brain to think the limb is still there. It is very easy to do. A mirror is placed so that it reflects the remaining limb, in my case the right leg. While having focused concentration you watch the reflection of the remaining limb being moved. The idea is that your brain is tricked into thinking the reflection is the missing limb. Doing this daily over time has been found to be successful in greatly reducing phantom pain for good. I have to say, while doing the mirror therapy I feel amazing and it really does seem like the reflection is the amputated leg. I will report on its success in 4 to 6 weeks.

So the leg that caused me years of agony now seems to haunt me with phantom pain. Many have asked “is the pain the same”? My answer is no, it is oranges to broccoli. While the phantom pain can be bad at times and the phantom sensations can drive me insane, this journey was one I knew wouldn’t easy. With time the good days will outweigh the bad ones. What is important is to remain positive and appreciate the small breakthroughs. I chose to amputate with the knowledge that I had a long road ahead to better walking days. That is where I keep my focus: on better walking days ahead.

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Resources

http://www.mayoclinic.org/diseases-conditions/phantom-pain/basics/definition/con-20023268