Advice on phantom pain management?

[GotMyPony]

My husband, who used to trail ride with me, had a below-the-knee amputation of his left leg 8 years ago after a motorcycle accident. Unfortunately he continues to suffer bad phantom pains, often feeling like something is twisting a clamp on his now-missing left foot. It occurs pretty frequently and the pain is severe enough to keep him awake most of the night.

I haven’t had any luck researching info on advancements in phantom pain management - surprising considering how many vets are amputees now! - so I wondered if anyone on COTH has had similar experience and could give me some advice or references.
Thanks in advance for any responses.

[Simkie]

Has he tried mirror therapy? I honestly know very little but have read some very interesting articles.

[Foxglove]

Seems like Time Magazine had an extensive article on pain --one finding was a new treatment for amputees and phantom pain. This involved placing a mirror to reflect the existing leg, foot, hand to the sufferer. He/she would look at it for awhile (don’t remember how long). After looking at the reflection in the mirror, the phantom pain subsided --how long, I don’t remember --but there was something about the brain sending an “are you there?” nerve transmission --then when not having a response, increasing the nerve burst to try to “wake up” the sleeping (missing) appendage. Somehow, seeing the limb short-circuited the “are you there?” pain message. But if this were all that simple, it would seem like your MD would have heard of it . . .it is on the web:
https://en.wikipedia.org/wiki/Mirror_box Might help --sure seems like it wouldn’t hurt!

[mountainhorse]

Acupuncture might be something to look into as well to ‘relieve’ residual energy left from the ‘trauma’ of removing a limb (or organ).

[Where_sMyWhite]

Is he working with a pain management specialist?

[Ceylon_Star]

My physiotherapist and I employed mirror therapy to help “reset” the nerves in my leg/hip that were causing electric shock type pain after I fell off my pony and pinched a load of nerves in my hip/groin. Every touch was agony. So we used mirror therapy, reflecting the injured leg, and used light touch with things like feathers whileI watched the mirror, and it worked surprisingly well. Once I was able to weight bear again (I destroyed my ankle on that side in the fall), exercises helped unpinched the painful nerves, but now i’m left with no feeling from the hip down.

Very different injuries, but thought it might help to hear first hand experience with the mirrors. It sounds hokey,but it’s pretty cool what brains are capable of!

[Magicboy]

I also had mirror work as part of PT on my hand…I have a thumb that my brain can’t move and the mirror therapy was used to rest my brain signals, I guess it did help

[GotMyPony]

Thanks for the info on mirror therapy. Intriguing and certainly worth trying. I’ll also look into the acupuncture - sounds reasonable since phantom pain is thought by some to be tied to the bundling of nerve endings where the limb was removed.

Appreciate the responses. It’s hard to know how to help someone whose pain area “isn’t really there”!

[GotMyPony]

Thanks for the info on mirror therapy. Intriguing and certainly worth trying. I’ll also look into the acupuncture - sounds reasonable since phantom pain is thought by some to be tied to the bundling of nerve endings where the limb was removed.

Appreciate the responses. It’s hard to know how to help someone whose pain area “isn’t really there”!

Having problem getting my “quick reply” to be accepted. Sorry if it ends up in duplicates.

[Magicboy]

It’s real pain, I think.

[juby2be]

The pain is definitely real.

Do try the mirror technique. If you need more than that, I would honestly suggest some energy work. It’s a bit out there for some, but the changes can be both dramatic + amazing.

Also, here’s this:
https://www.ncbi.nlm.nih.gov/pubmed/22286895

You’ll have to subscribe to the journal, but they seem to have a few more articles on phantom limb pain too.

I find this stuff fascinating, as I love somatics (I’m a massage therapist) and this kind of stuff is right up my alley. (That does not mean I’m an expert though!!!)

Best of luck to your husband. If you (or he) ever wants to chat, feel free to pm.

[GotMyPony]

[QUOTE=Magicboy;9004898]
It’s real pain, I think.[/QUOTE]

Oh I’m 100% sure it’s real pain having seen how my husband suffers with it. When I said “the pain area isn’t really there” I meant that his leg/foot are not physically there anymore in the sense that he could massage it, try some kind of deadening lotion/ointment, or injection, etc., all the things we would try if we had some kind of injury or ailment on a foot that was physically still with us.

[GotMyPony]

Juby2be, Thank you for the information on energy work and the mind-body intervention. I will look into both areas, I’d really love to find something that works for him. As I said earlier I can’t believe there doesn’t seem to be much focus on new research - at least that I found - considering the number of veterans who are missing limbs from Iraq/Afghanistan.

[Magicboy]

When you are exploring energy work, you might try searching for reiki practitioners.

[pegasusmom]

You might try posting on the Amputee Coalition of America Facebook page. That organization has been helpful for us.

[juby2be]

GMP- you are quite welcome. I’m going to pm tomorrow after I clean out my inbox.