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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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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,

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Gil, I have very, very little in the way of phantom pain episodes... as far as I can recall, there have only been two incidents so serious that they've interfered with my daily life in as many years.

Interestingly, purely through dumb luck, I had pretty close to the anesthesia "cocktail" that is commonly recommended for preventing phantoms: because of the ongoing severity of my foot problems (and the pain that came with them), I was already using meds for pain control when I arrived at the hospital... because I was considered too medically fragile for general anesthesia, I was given an epidural for the initial exploratory surgery on my broken foot... and because they realized I'd be back in surgery in less than two full days, they kept it in place in the interim. It took quite a while for all that to wear off following the amp... and then I had very good pain control (IV and oral meds) for the next week.

Obviously, I have nothing to compare it to... but I've always felt very fortunate in having no serious, ongoing problems with pain!

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Hi Gil

My amputation was also due to trauma and I was given a general anaestesia (sorry don't know how to spell). I have experienced severe phantom pains since my second operation where they took my leg but the pains are from my foot.

Thanks

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Hi,

Thankfully phantom pain is very rare for me although I do get other sensations relating to the absent foot. Mine was planned sugery (almost 30 years ago) and was under a normal general anaesthetic, followed intially by morphine injections.

Sue

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Hi Everyone, I have experienced phantom pains due to the weather changes... and I still believe the hoffman appartus that they used on my leg before they amputated, 1 year later.. I get electrical shocks and burning sensations. Jerry

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I'm always reluctant to admit that I have little to no phantom pain (Because I feel unworthy of being so 'chosen').

My situation was much like Cheryl's... I was in the hospital and doped up massively for over two weeks before the amputation (they were trying to save my leg from bone infection). I can only think that the drugs I was on for those two weeks, hot wired my brain to my advantage.

While I don't experience phantom pain, I do have the usual assortment of things like infrequent electric shocks and continually feeling like my stump is asleep (you know that 'buzzing' feeling).

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General anaesthetic, with lots and lots of morphine drip.

Get a lot of feeling, wiggling toes and such, but not a lot of pain. Lightning zaps or the feeling of a knife in my foot, but never lasted very long, an hour at most. Had one yesterday, but it maybe couple of months before I have another.

--Bill

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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

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Lisa, as a new amp, I had what I called phantom 'sensations'. Like, I could feel my ankle just as if it were still there. (But not pain.) The phantom sensations are mostly gone now.

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Lisa, no I have had never had 'bad' phantom pains. I have always had a range of sensations from my leg jumping (apparently it is trying to flex my non existent ankle) to moving toes and other weird feelings but very rarely any actual pain. The pain that I do get is in the part of my leg that is very much still there which is a whole different thing.

Sue

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I have to join the group of trauma patients.....

After the accident, they reattached my foot, but 4 days later, amputated it. I was on a morphine pump, and heavy pain killers after the re-attachment, so Hubby tells me. I do have phantom pain, and phantom sensation as well. Took a while to figure out the two of them in the beginning..

Mine are usually a very sharp pain, mostly in the ankle area where the foot was broken off...

The electric shocks, well, they come when ever they choose. I also will experience a very distracting pain that feels like someone is boiling my foot, right before a rain or snow..

I have to say though, I think the absolute worse was when I started itching on my shin bone....It only happened once, thank God, but once was enough.... Mirror image didn't help, scratching the right leg didn't help.. Finally, in total desperation, I ended up scratching Hubbys left shin... :blink: but it worked, and that was all that mattered....

The only thing that seems to help when the phantom pains are bad, is putting on my dreaded shrink sock...for some reason, it seems like the phantom pain will worsen when I take my liner off..and putting the shrink sock on seems to help a little....

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Joe A. I understand what you mean by a feeling of your toes being pressed. Included in my phantom sensations is the feeling that there is something lodged between my (missing) big toe and the next toe. Odd. :blink:

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I can't vote here, Gill, as you haven't given me enough options! :(

My AK is absolutely fine most of the time and I get very little sensation from it. Probably because I was a baby when I had my amputation.

Whilst my BK has always been a problem. :blink: I developed a soft tissue infection soon after my amp and they squeezed the pus out, without meds (GA. LA or sedatives) on the ward...they told me not to scream as I'd frighten the others...:ph34r:...lots of pain, but no pus! :angry: Not surprisingly, I developed an enormous neuroma soon afterwards. For years I managed to distance myself and forget about it, but when I developed severe arthritis in my knee the pain and sensations got worse...:huh: But, thankfully I can control it with a Farabloc sock...it's definitely not a placebo affect as it has improved my sleep pattern...not sure how it works, but it works. :blink:

Lizzie :)

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Hi Gil,

Mine was a trauma as well, I remember something about a general being mentioned on the way to the hospital, but to be honest if they gave me a gun I would have pulled the trigger myself, I really didn’t care at that time.

The main things that trigger my phantom pains are:-

High humidity

Stress

Thunderstorms

And getting dehydrated.

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Mine was elected surgery.

Had epidural and intrathecral lines. had them in for several days post op, didn't stop me from getting phantom pain though.

Lynne

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Had epidural and intrathecral lines. surposed to keep them in for two days post op, they fell out straight away once I was back on the ward, as I didn't suffer from any pain except from stitches pulling they left it. 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.

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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.

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Guest bearlover

I have phantom pain non stop 24/7...I always have had pain since a infant..I have been told that the more pain a amputee has before the more or continued pain after.I have tried medications, nerve blocks and what ever else..Just learn to live with it..I have no choice and want a life with my wonderful husband..We are young and I won't give up.

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Hi Gil:

I work in the Operating Room, and have seen that most new amputee patients have less "Phantom" pains if the recover with the ENDOBUTTON. This enables the patient to administer the "pain killer" by themselves at whatever time they need.

Lynne

Canada

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,

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I can't vote here, Gill, as you haven't given me enough options! :(

Whilst my BK has always been a problem. :blink: I developed a soft tissue infection soon after my amp and they squeezed the pus out, without meds (GA. LA or sedatives) on the ward...they told me not to scream as I'd frighten the others...:ph34r:...lots of pain, but no pus! :angry: Not surprisingly, I developed an enormous neuroma soon afterwards. For years I managed to distance myself and forget about it, but when I developed severe arthritis in my knee the pain and sensations got worse...:huh: But, thankfully I can control it with a Farabloc sock...it's definitely not a placebo affect as it has improved my sleep pattern...not sure how it works, but it works. :angry:

Lizzie :)

Mine was trauma too, likewise no choice of anaesthetic, but am not complaining as they probably saved my life.

Lizzie, sounds like you were at the same hospital as me. I think I was on morphine to start with and not surprisingly do not remember much pain, however apparently I started asking for more and more and they were worried about addiction, so was taken off it completely cold turkey. No one told me about phantom pain, so I didn't know about it, I can't really remember too much about it, but I think in those days stumps were kept bandaged a lot more and I think maybe this can help, as well as keeping the stump warm. I do notice that coldness and inactivity for me is a contributing factor.

I have a similar sock to the Farabloc on order, will let you all know how it goes.

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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,

Gil, I have almost no phantom pain and very little phantom sensation. I believe it is due to the Medtronic spinal cord stimulator implant. That device was put in in May of 1996 - my amputation was November 2005.

JudyH

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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.

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Guest bearlover

I have had the feeling that someone is stabbing the bottom of my foot with a ice pick :blink: And that my toes are tied up with a rope... :o Has anyone ever had this..Aslo my "tibia" is killing me especially when it rains out..I had many operatiions on the tibia before amputation and the pain still continues even thought it is gome..I tried many drugs, patched. nerve blocks what ever you name i tried it.Even farablock which did squat... :(

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On the occasions when I have pain (thankfully rare!) there are three sensations that I'm likely to feel:

1. My leg ends at the bottom of my stump, and my stump has been inserted into a large jar of angry bees.

2. My leg is "full-length"; I can feel my toes, and someone is pulling the baby toe so that's it's at a 90-degree angle from its little toe brethren.

3. My leg is "full-length"; I can feel four of my toes (the "baby" us missing); someone has gripped my fourth toe with a red-hot pair of pliers and they're trying to twist it off.

Then there's the one that doesn't hurt at all, but it definitely feels wierd:

4. My leg ends at the bottom of my stump. I'm either wearing my prosthesis, or I FEEL like I'm wearing it... and my former big toe is floating around down in my foot, unattached to anything but able to send sensations to my brain.

Sorry... no icepicks, Bear... that one sounds nasty!

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Guest bearlover
On the occasions when I have pain (thankfully rare!) there are three sensations that I'm likely to feel:

1. My leg ends at the bottom of my stump, and my stump has been inserted into a large jar of angry bees.

2. My leg is "full-length"; I can feel my toes, and someone is pulling the baby toe so that's it's at a 90-degree angle from its little toe brethren.

3. My leg is "full-length"; I can feel four of my toes (the "baby" us missing); someone has gripped my fourth toe with a red-hot pair of pliers and they're trying to twist it off.

Then there's the one that doesn't hurt at all, but it definitely feels wierd:

4. My leg ends at the bottom of my stump. I'm either wearing my prosthesis, or I FEEL like I'm wearing it... and my former big toe is floating around down in my foot, unattached to anything but able to send sensations to my brain.

Sorry... no icepicks, Bear... that one sounds nasty!

Thanks Cherly..!.It is really odd I could be fine and all of a sudden OUCH! The ice pick right in the boton of my foot!! That is not there :o Right now my foot is on fire with knife being pushed in it! :rolleyes:

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