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Heather Mills - Amputee Forum
Gil Davis

Prevention of Phantom Pain

Level of Phantom Pain  

51 members have voted

  1. 1. What is your level/frequency of Phantom Pain?

    • Severe/Ongoing
      13
    • Moderate/Often
      11
    • Slight/Just Occasionally
      18
    • Never/Very infrequent
      9


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My stump usually always has the buzzing thing going on. Somebody on the forum (can't remember who) once described having "zingers and zappers" and I knew immediately what that was. I have those occasionally. And I always have phantom sensation. I can feel my leg and foot just as if it were there, but I can't wiggle my toes! I occasionally get the feeling hot pokers are being stuck in my big toe and sometimes I'm being stabbed in the ankle. It never lasts for long, thank goodness. I feel really lucky.

I was on a lot of pain meds and a morphine pump in the hospital before the amp so maybe that helped keep the phantoms at bay. Like Cheryl, though, I think it was just dumb luck :) .

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Hi

I would be interested to know if those of you who don't get any or little pain, ever had bad phantom pains and they have become weaker as time has gone by?

Thanks

Lisa

It has been 28 years and while I rarely get the severe jolting pains that I experienced in the first years after amputation I do have phantom pain all the time. Wearing a prosthesis lessens it and I think I have learned to put it out of my mind over the years. When laying in bed some nights it seems to increase in intensity. But it is not something that interferes with my daily life.

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I am also a trauma amputee. I had a general anesthetic and a GP did the amputation :rolleyes: . There wasn't a surgeon available at the hospital so late at night, and I was dying anyway.....

For the first year or so I had CHRONIC phantoms 24/7. Probably explains why I'm a bit loopy now.

After being an amp for 12 years, I have constant phantom sensation. Always. It doesn't bother me anymore. I don't get phantom pain very often now, perhaps a couple of times a year, but when it comes, it comes properly and knocks me flat for a few days. The "zingers and zappers" hit me every 20 to 30 seconds for hours on end, and I probably get about 2 hours sleep a night during my dance with the phantom devil. Actually, I might not even sleep, who knows.....I take hectic drugs when my pain comes calling.

Lovely <_<

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As long as I wear a very tight sock or shrinker sock, I have no phantom pains....but without those socks I do. I have never been able to go without the socks. I find weather has alot to do with discomfort also.

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Jerry.....

I had one of those on my foot, before my amputation,after they had re-attached it, and I also had one in my mid torso area, to keep me together where I was broken in half....

If a person were to ask me to describe what hell on earth was, I would have to say it was wearing the pelvic fixator....

They are very nasty contraptions indeed...

Higgy

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I get sensations and every now and then I get really bad phantom pain, this only happens when I'm not wearing my arty legs.

Same with me Sparky.

However, years ago the stumps were always kept bandaged and I never got them at all, so do wonder if there's a connection with circulation.

Ann, I think there is a connection as well and have been experimenting with bandaging.

Hi Sparky

The bandages I used were I think four or six inch wide elasticated bandages. I understand that this procedure was discontinued for health and safety reasons so anyone thinking of this really ought to seek advice first. When I was taught to bandage my b/k stumps there was a preferred method of bandaging the stump to keep it a good shape and to avoid hindering circulation.

I think I was taught to do this at the limb centre, you would probably need to find someone from the old school to advise on this, as its rarely used today. When I was in hospital some years back, the nurses were amazed as it wasn't a technique they'd been taught.

Its different bandaging an a/k from a b/k, so caution is advised.

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ive only been missing my foot for 2 months but I havent had any episodes. what is constant is the sensation of electricity? in parts of my foot. sometimes intense and uncomfortable but not painful. I think the standard at my hospital for anesthetic is intravenous that includes phenol.

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I have constant phantom pain and sensations. The sensations don't bother me much nor do they interfere with my life, but the pain is a different story. I take 100mg of lyrica 3x's a day. It takes the edge off and without it I don't think I could go about my daily life. I have tried accupuncture and various other remedies meant to help but have had no luck. My "foot" is constantly burning, pinching, and painfully tingling with occasional "lightning bolts" and I am soooo tired of it!!!!!!!!

I desperately want to be medicine free and am constantly in search of new ideas for pain relief!!!!!

I was in a drug induced coma for a week as doctor's decided what to do with my leg that had lost most blood flow. I believe that I was sedated as well as under general anesthesia during my amputation...obviously it didn't work for me!!

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I get sensations and every now and then I get really bad phantom pain, this only happens when I'm not wearing my arty legs.

Same with me Sparky.

However, years ago the stumps were always kept bandaged and I never got them at all, so do wonder if there's a connection with circulation.

Ann, I think there is a connection as well and have been experimenting with bandaging.

Hi Sparky

The bandages I used were I think four or six inch wide elasticated bandages. I understand that this procedure was discontinued for health and safety reasons so anyone thinking of this really ought to seek advice first. When I was taught to bandage my b/k stumps there was a preferred method of bandaging the stump to keep it a good shape and to avoid hindering circulation.

I think I was taught to do this at the limb centre, you would probably need to find someone from the old school to advise on this, as its rarely used today. When I was in hospital some years back, the nurses were amazed as it wasn't a technique they'd been taught.

Its different bandaging an a/k from a b/k, so caution is advised.

Hi Ann,

I have spoken with my Amp centre about this and I was interviewed by a physio for a training video about this very subject. My leg girl did know a lot about the procedure you have mentioned and also gave similar warnings. Fortunately I do not need to bind my stumps very tightly to get relief from the phantom so they are happy for me to continue with what I'm doing.

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I have a friend who is a surgeon and who would be very interested in what kinds/types of anesthetic procedures result in the least phantom pain.

I've seen a lot of postings that tend toward an epidural as the best method.

Many of us (myself included) are amputees due to trauma, so we had little choice in anesthesia.

If you take this poll please note the kind of anesthesia you had and the outcome.

Thanks,

Interesting. I'm curious to hear how he feels the anesthetic used during your surgery would affect phantom pain. Can you expand on his theory a bit?

My surgery was done under general anesthesia. I don't have what I would consider phantom pain. I'm an AKA (23 years) and can still feel my lower calf, foot, etc. if I think about it, but it's more of a numb sensation rather than pain. The only other thing I experience is what I believe is some type of nerve issue with what feels like someone jabbing me with a knitting needle. This doesn't happen very often though, mabye a few times a year.

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JenH,

I'm sorry to tell you, but Gil won't be able to answer your questions as he passed away a few months ago from lung cancer..however.... others might answer them though....

As for me, I do have phantom pain, and I, like Gil, had my amputation because of trauma..I don't know what the exact anesthetics they used was, as I was in surgery for many hours, but I have a sneaky suspicion that it was phentynal and verced... That's what they used with the other 5 surgeries that I had..

My phantom pains come when it is going to rain or snow, or if I am extremely tired from overworking..

They come in various ways, but the most usual one is when it feels like someone is cracking me on the ankle..Which, from all reports I read, the cuboid bone was protruding out of the skin as one of the injuries on that ankle.. I do have the sensation of someone sticking me too, as well as sometimes, it feels like someone has one of my toes in a vice squeezing it..

One of the theories is that if the pain is contolled by an epidural, than you are more likely to have less phantom pain afterward. Good pain control prior to amputation....and right afterward.

Sorry that I couldn't be of more help...

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JenH,

I'm sorry to tell you, but Gil won't be able to answer your questions as he passed away a few months ago from lung cancer

Oh gosh, I'm sorry to hear that. :( I haven't been to this forum for quite a while so I had no idea.

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:wacko: Although I have been out of the hospital only two months, I had my amputation done on the 1st of January 2008, beginning of new year for me, I also was kept in a coma and was on epidural, after coming round I was on a pain pump for three weeks. I have phantom pain constantly, my toes feel curled up in a shoe that is too small, my knee aches and burns (I am AKA). I have nerve damage from my groin to foot on my left leg leaving me unable to walk. Although I am confined to wheelchair my pain is constant I have been on Gabapentin 300 mg x4 daily also Tylenol 3 this has not done much for any of my pain levels. Nor do I sleep any better. I have a stabbing knife like pain in my residual limb every time it gets bumped or when I transfer. I had a hematoma drained a few weeks ago, but that has not altered my pain. I am at the end of my rope, I get edgy grump etc..from pain sometimes. I do live alone so that in itself is a bonus no one to hear me complain. I am back into life full force joined a group for an 8 week session on Coping with Disabilities, joined a Lunchability Club that is active once a month for group outings, ie this month it is Sailing the pain is not stopping me from joining life and my friends and family it would be a better life without it is all that I say. And I am not a candidate for any prosthetic anytime soon so they will not give me a shrinker but am very curious about wrapping and may try a method of it. Thanks for the advice and support this site offers. Joy :rolleyes:

THe only disability is a bad attitude!

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Why can't you have a shrink sock? For me, it helped with the phantoms.

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:wacko: Although I have been out of the hospital only two months, I had my amputation done on the 1st of January 2008, beginning of new year for me, I also was kept in a coma and was on epidural, after coming round I was on a pain pump for three weeks. I have phantom pain constantly, my toes feel curled up in a shoe that is too small, my knee aches and burns (I am AKA). I have nerve damage from my groin to foot on my left leg leaving me unable to walk. Although I am confined to wheelchair my pain is constant I have been on Gabapentin 300 mg x4 daily also Tylenol 3 this has not done much for any of my pain levels. Nor do I sleep any better. I have a stabbing knife like pain in my residual limb every time it gets bumped or when I transfer. I had a hematoma drained a few weeks ago, but that has not altered my pain. I am at the end of my rope, I get edgy grump etc..from pain sometimes. I do live alone so that in itself is a bonus no one to hear me complain. I am back into life full force joined a group for an 8 week session on Coping with Disabilities, joined a Lunchability Club that is active once a month for group outings, ie this month it is Sailing the pain is not stopping me from joining life and my friends and family it would be a better life without it is all that I say. And I am not a candidate for any prosthetic anytime soon so they will not give me a shrinker but am very curious about wrapping and may try a method of it. Thanks for the advice and support this site offers. Joy :rolleyes:

THe only disability is a bad attitude!

I did not have a lot of phantom pain originally because I already had a spinal cord stimulator implant and was wearing duragesic narcotic patches. I had a surgery which decreased the pain in my other foot and cut down on the narcotics and the phantom pain appeared. If I turn up my stimulator it helps a lot. I also take gabepenton 1200 mg x 4 a day. I don't think I could live without it - I have diabetic neuropathy.

JudyH

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I was a AK trauma amputation and I think I had a general anaesthetic followed by a self administered morphine drip for one week, high dose opiates for another two with gabapentin and then tramadol and gabapentin. I find that my phantom sensations are constant and a complete pain in the neck. I have pins a needles that radiate up and down my leg. My toes feel like they're stuck together and I often get stabbing and burning sensations. My real leg, before it was amputated had a scar across the foot where I dropped some hair straighteners; I find occasionally I feel the pain of that wound and various ankle injuries I have had in the past. I also found that I didn't have phantom sensations until I began the opiates and was taken off the morphine drip.

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Epidural. was on so many and so much drugs during the month I was in the hospital I had to go to rehab for drugs and had a terrible time with withdrawl. My phantom pains have only subsided a small amount from where they were at the beginning. I gave up on the meds and therapies and just put up with them everyday. some days are better than others.

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Epidural. was on so many and so much drugs during the month I was in the hospital I had to go to rehab for drugs and had a terrible time with withdrawl. My phantom pains have only subsided a small amount from where they were at the beginning. I gave up on the meds and therapies and just put up with them everyday. some days are better than others.

Me too!

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Hi All,

I was prescribed Neurontin a/k/a Gabapentin after my elective amputation in 2010 and it has worked well. My amp is a right leg through knee and for the most part my foot just feels like it is asleep. I've been very, very fortunate to only have experienced "zingers" rarely. That type of phantom pain is very, very well named.

"Mirror therapy" is another option that has helped some folks. Back when I had just became an amp I started to try it then life got in the way with family, work, therapy etc. Some where on this site I wrote about this technique and the steps to follow. I'll look later and direct anyone interested to that area. Maybe I'll give it another try. Nothing to lose except one less prescription.

Have a great weekend everyone!

Jane

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I have lived with it for almost 16 years and find it to be the worst from weather changes and early in the morning when I get up out of bed to relieve myself and than try to go back to sleep. I use to have trouble going to sleep, but I now usually tire myself so that I can go right to sleep. My limb can get cold at night this time of year too but not sure if that plays into the neuropathy firing up.

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