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Heather Mills - Amputee Forum
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Phantom pain

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Hi my wife is a BKA,she has now had her prosthetic 5 weeks.What I would like to know is how you manage phantom pain.At first they were not too bad but this last week has been hell for her,the pain has been so severe it brought her to tears and depressed her.I wanted to help her but what could I do.?

My wife takes Gabapentim 300mg x 2 three times a day which i believe is to help phantom pain, however it appears to do no good, I shall be asking the doctor tomorow if there is a stronger dose available.

I would be interested in how other amputees cope with this problem. :smile:

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Hi my wife is a BKA,she has now had her prosthetic 5 weeks.What I would like to know is how you manage phantom pain.At first they were not too bad but this last week has been hell for her,the pain has been so severe it brought her to tears and depressed her.I wanted to help her but what could I do.?

My wife takes Gabapentim 300mg x 2 three times a day which i believe is to help phantom pain, however it appears to do no good, I shall be asking the doctor tomorow if there is a stronger dose available.

I would be interested in how other amputees cope with this problem. :smile:

Im a RAK for one year now. I take the same meds as your wife, I find they take the edge off only.

Have been having alot of phantom pain, to the point of not sleeping 2-3 nights a week. I am trying to get scheduled for Phenol injections next week, they find the neuromas in the stump with ultra sound, and inject them with Phenol. Here is a piece about it.

http://www.ajronline.org/cgi/content/full/182/4/952

I'll keep you informed of the out come.

Jim

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Thanks for your reply Jim, thank you also for the link which I have just read. Yes I would very much like to be kept informed on how you get on after your Phenol injection.Good luck for next week.

Cheers

Dennis

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Hi Dennis

Unfortunately I have no magic pill or advice to offer you or your wife.

I had no Phantom Pains till after I came out of hospital and no knowledge about them so when they hit me they caught me totally unprepared. I was at one stage rolling around the floor honestly believing that I was going to die I was in so much pain.

The next day I contacted my G P who dished out Gabapentin when that didn’t work he simply upped the dose. Didn’t make any difference. Then put me on Amitrypalene (spelling) didn’t work, tried some other stuff still did no good.

By this time I was seeing double and I decided to come off all medication.

Went out and got a tens Machine again no good

Tried the distraction methods i.e.

Relaxing music

Massage: - again no good

By this time I hadn’t had hardly any sleep for weeks which makes it even worse,

Then I was offered acupuncture, I am not saying it worked but after the very first session I had a full night’s sleep for the first time & that was the turning point. It might have been pure coincidence.

As time went on they died away, I still get phantom pains now and again but I normally know what triggers them and how to (in most cases avoid them)

One last thing some people have used a “farablock” sock might be worth a look .

Sorry I can’t be of more help …………………..Mick

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Thanks Mick for your input, sorry to hear that you had such a rough ride with it, hope the worst is now behind you. I will read up on the Farablock sock I'm looking at all possibilities in the hope of finding something to ease the pain. Because of the pain she was so glad to be rid of her leg, little did we know it would return in phantom form.

Regards

Dennis

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Phantoms are different for everyone. Mine thankfully went away when I became active again and using a prosthetic daily. I only get an occasional zinger when I've been a little rough on Stumpy. Zingers are very intense pain that shoot electrical type shocks up the leg, usually starting in the foot. They usually come on with no warning and can be very painful. Mine usually last for only a few jolts, but I've heard of some lasting up to 24 hours. I pity that poor person.

I can also experience some minor pain when the weather changes. The minor ones can usually be overcome by getting busy and utilizing my brain on other activities.

Make sure the leg is fitting properly. That can also bring on the phantoms. The nerves that served the foot are still embedded in the stump. The leg might be placing undo pressure on that spot which is usually located between the two bones toward the outer side of the stump.

Good luck to her.

Neal

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I'll throw in with Neal, here, with the suggestion that you make sure the prosthesis is fitting properly. I get very, very few episodes of phantoms, but the two things that can trigger them for me are "overworking" the stump and a badly fitting prosthesis.

You say she's had her leg for five weeks...that's actually enough time for a new amputee to undergo enough stump change to require an adjustment to the socket. If she's working up to wearing the leg for long periods, that can also mean some additional stress on the stump.

For many people, the phantoms will fade with time...that's not always the case, but it's common enough that it can give her something to hold on to. I get a bad spell every year or two...the rest of the time I'm either pain-free or dealing with only very minor "shocks."

Heat can help, sometimes, as can compression...I don't take major pain meds, even when I'm in the middle of one of my "spells," but I DO keep a shrinker sock around to wear when I don't have the leg on at times when the phantoms are bad.

Phantoms can be so very frustrating...I hope she can find a solution!

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