PHANTOM PAIN & LIMB: Everything You Wanted to Know!

What is phantom pain? Does mirror therapy work? What IS phantom pain?? Let me answer every question you've ever had about phantom limb pain and sensation!

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Fourteen years of pain and failed ankle surgeries brought me to 2018, when I made the difficult decision to become a twenty-seven-year-old below-the-knee elective amputee. This channel is to document my journey of amputation surgery, recovery, and reclaiming my life.

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I use the Ossur ProFlex XC Torsion foot/ankle with a direct socket with passive vaccum suction.

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[kathrynwallace]

Brains are weird, people are weirder, and cats are the source of all entropy.

[PregnantWithKittens]

Question: Does your phantom ankle feel fused? Or does it feel how your ankle felt before your horse riding accident? Or does it vary? I'm really curious which stage of your ankle's life your brain decided to recreate.

[Alex-dccl]

There’s a mirror trick that people with two hands or two feet can do to experience a bit of what you explain with the mirror therapy. Basically you place your limbs so that they are mirroring each other and then place a mirror in the middle so you can only see one limb. Then someone can touch you in the same place on both limbs. Then they only touch you on the limb you can see and you will feel that sensation on the other limb as well. I did this at an interactive science museum once and it was really cool. It’s obviously a little different to mirror therapy, but the science behind it is the same.

[saraquill]

I’m not an amputee, though one of my pets is. One of my worries is him having phantom pains and me being unable to know or help.

[lowercherty]

"I'm wiggling my toes right now. " Used that exact line with another new amputee walking at the mall earlier today. He asked about phantom pain.

[skeetsmcgrew]

This thumbnail is like the most overly optimistic amputee ever. "See, it's really gone! Cool, huh!!"

[chanelcreadora]

This video was very emotional for me. I am not an amputee. I was in a cheerleading accident that left me paralyzed. Slowly through multiple surgeries, seemingly endless therapy, and five years later I regained the ability to walk. I can even run. But the pain I experience is very similar to how you describe. I have never heard another person put it into words. It’s so validating. I’m actually crying. THE ITCHING IS THE WORST!!
So, I do have my legs. But my nerves are permanently damaged. Thankfully, my nerves healed enough for me to regain the ability to walk. But with testing my doctors have concluded that the nerve signals are incomplete. Think of it like wires. There is too much trauma (kinks in the electrical wires) and the signal to/from my brain and spinal cord cannot complete the circuit to/from my legs. So I feel pain for everything from my belly button down.

I cannot control some of my muscles well. I have “drop foot” for my left foot and I struggle to wiggle the toes on my left foot. My muscles are constantly twitching all day. I am on Gabapentin as well. It does help me. It’s better than not being on it. But so far, nothing has made the pain go away. And I’ve been on morphine to help the pain. NOTHING MAKES IT STOP. For me, the itching is the worst for a different reason. I CAN scratch. My leg is there and I can scratch it. However if I do, I will feel a searing white hot pain so badly that I sometimes pass out. So, I DARE NOT SCRATCH! 🤣
It makes me feel better to joke about my pain. Makes it easier to cope with. My husband and I make jokes all the time.
It feels like electric buzzing through my legs all the time. Different levels of severity depending on the pain. But the worst of it is when it gets so bad that eventually, it feels like my legs are on fire.
I cannot stand to be touched. The gentlest touch feels like someone slicing my skin open with a rusty knife. And when I walk, I feel like I’m walking on glass (like Ariel)
The pain never stops. Only decreases or increases severity. I was in a lot of pain when I was initially paralyzed. But I think it only felt intense because before my accident, I was used to life without any pain. I can say that once I got the function of my legs back and I could feel them again, the pain got worse. I used to not feel touch but they hurt all the time. But I could slap them and it wouldn’t change the pain. But now, I have the sensation of touch back. And being touched is extremely painful. Sometimes I’ll endure the pain, just to accept my husband’s affection. He’ll put his hand on my lap. And he forgets that it hurts me. He’s just trying to show me love. And I’ll endure the pain, just to accept it. Eventually, he realizes either through my breathing or my face that he’s hurting me and he’ll stop. And it’s a sad moment for both of us.

But he has a metal rod in his hip from a car accident. So, he gets it. He understands first hand what it’s like to live like this.

[barryfields]

I had never heard of phantom pain until I experienced it. It was the weirdest thing ever.
My surgery was emergency, so no one had a chance to talk to me about things like that.

[laurenhawley]

I wonder if someone had nerve damage pre-amputation and didn’t feel part of their foot, if they would only feel phantom pain in the part of their foot they could still feel or the whole foot?

[STANSTAN]

I get the electric shock feeling it hurts so bad. I really hate the the feeling that my toes are crossing over each other. The mirror therapy did not help my pain I'm sorry to say. I also can still feel my missing foot it is soooo weird.

[KatlynJShute]

Okay, I don’t have a missing limb but I don’t have a gallbladder anymore and I swear to god I will still get phantom pain attacks when I eat something I shouldn’t. It is totally real!!!

[ILoveJesusMySavior]

Ooh random question: If you were doing mirror therapy, and you put a nice toasty heating pad at the bottom of your foot that was still there, and you looked in the mirror, would your absent toesies get toasty? Curious to know if heating pads or ice packs could help with phantom pain in this way.

[ravensrealm]

Ooo I've always been curious about this

[bluedeva]

I’ve heard there is a newish type of operation where they sew the nerve endings to another nerve so that the nerve circuits become complete again and this I supposed to help. I had tmr & ertl for my AK amputation but I’m still left with both the phantom sensations and phantom pain. Ive used the mirror therapy, visualisation, breathing, heat and desensitisation therapy. I also just put my leg on and that also helps 🤗 PS I felt everything Jo explained as she said it, 😖 sometimes just talking about it will trigger the crazy 👻 phantoms. The worse ones have to be the zappers/cattle prod 👻which will make me physically jump even after 5 +yrs thankfully they only happen when I’ve done too much or if I’m run down (I do still get the evil knee pain but rarely) Does anyone get pain if they stubbed their toe (on the prosthetic foot) 🙋🏼‍♀️🤗

[peterbumper]

I am RBKA, i am also missing my big toe off my left foot
i get more phantom pain from the missing toe than I do from the missing leg

[Felix-qqsx]

4:42 This may sound weird, but I can actually see your leg muscles twitch in what seems to be the rhythm of the brain signal to wiggle your toes.

[HParadoxa]

Can't TENS be used for phantom pain ? I have no clue but I'm just thinking that the whole point is to stimulate nerves to "distract" them from pain so it sound like it might be relevant ?

[laurad]

Hi Jo! Thanks for this video. Phantom pain is fascinating to me but it must be horrible to experience it! During my work as an OTA I worked with some amputees and always remembered this patient dressing her lower body trying to get her missing foot in the pant leg. She used the same mechanics as if the foot was still there. Makes sense but very interesting to me. Personally, I have CRPS in my left foot from a work injury and my symptoms are very weird. I cant stand any pressure on my foot and its gets extremely cold. Nerve pain is horrible and I feel bad for anyone that has to experience it. Thanks again for your informative video!

[MountainMan.]

I'm going to go out on a limb and say you look super cute in this one.

[elsatanguay]

I've had hip surgery two years ago (I still have my original body parts) and I've been experiencing some nerve damage pain at the site of the incision ever since that surgery... for the first 9 months it was mostly intense itching that you can do nothing about, now it's the occasional burning sensation, as if a curling iron was placed there. Bodies are weird!