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Heather Mills - Amputee Forum
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Hi Mari

Sorry to hear about your impending operation.

If you are going to have a pre-planned amputation, this is by far the most important thing you can look into now.....

You need to be sure that your surgeon and GP understand the implications of phantom pain. One of the theories surrounding this, is that the brain 'remembers' the last pain it felt, and continues to send the same pain messages to the missing limb after amputation, sometimes for a lifetime. If you read some amputee experiences of phantom pain, you will know that it is very real, can be excrutiating and very crippling in itself.

If you are having any pain now, you MUST get onto pain medication BEFORE the operation. This sometimes involves a 'cocktail' of pain drugs which your GP can prescribe.

The operation itself can be done with an epidural, coupled with normal anesthesia. If your GP is not performing the op, then discuss this with your surgeon.

We have a pain doctor on this forum. Perhaps he will check in and give us more info. There are also a few people here who have tried these methods and given very good feedback. I am sure you will hear from them too.

Although these methods have not been 'proven', there are too many amputees who are reporting little or no phantom pain after doing it this way. I would NEVER consider amputation without this. Please look into it.

Kind regards

Ally

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Hi Mari,

Unfortunately my amputation wasn't pre planned so I'm not in a position to give you any advice but I wish you all the best and know that there are quite a few people who will be able to help you out.

Cheers Mel.

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Hi Mari

My amp was planned. I took a lot of info re-pre-operation pain. I could not double up on my pain killers but can swear by the use of epidural pain control during and after surgery. Five months on from my operation and I have very little phantom pain. I no longer take any kind of pain meds.

Find a swimming pool near you. Good upper body strength is another must have.Hope this helps

Rachel

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Hi Mari

I had a pre-planned R bka just over 12 mths ago. Before my op, I researched as much as I could. I contacted amputee support groups and spoke with people who had been thru' it. I believe that there's no dumb questions, so I wasn't afraid to ask whatever was on my mind.

I 'shopped' and asked around to ensure I had the best possible surgeon to perform the operation and I spoke with surgeons and read as much as I could about phantom pain and how to counteract it. I also asked around about which was the best hospital to have the operation.

I found out as much as I could about what rehabilitation entails and how long I might expect to be away from work.

Knowledge is power, but all the knowledge in the world will never take away the post-operative reality of losing a limb. I had to learn daily to accept myself as I now am and learn to live differently in some areas of my life. This I still find hard sometimes, but it's getting easier.

I'm now back at work; I had my car converted to a left-handed accelerator and I've been driving for about 8 mths now; and I can still do most of what I used to

do.

Have courage. I wish you well - and remember, never be afraid to ask, anything.

Carole

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Hi Mari and welcome!

I'm sorry that you are having to join our ranks, but I'm sure that an amputation will benefit you very much, what with having a crushed ankle. You CAN and WILL return to the level of activity you had before your injuries. It'll just take a bit of time and effort, that's all.

I will second everything that Ally said with regards to pre-operative pain medication.

Indeed, I myself was on very strong painkillers before my amputations (not for phantom pain reduction by the way, but just for the fact that my necrotic feet were excruciatingly painful :( ) but now I am about 99% phantom pain free!!

I had a General Anaesthetic and opted for morphine IV as my choice of post-operative pain medication. The other choice was an epidural, which I didn't quite like the sound of. :rolleyes:

I have heard of the benefits of having the surgery WITHOUT anaesthetic, but with JUST an epidural. :o Whilst the thought of this freaks me out, apparently, it is quite successful, with regards to preventing phantom pains. I can't speak from experience though.

Anyway, I know I am one of the lucky ones to hardly ever suffer with phantom pains. I may have had some mild phantom pains immediately after the amputations, but that's normal and expected.

Now, 2 years on, I do get the occasional 'electric shot' up my stumps, but they are few and far between.

Also, I think it's important to say that you did the right thing by joining our forum and asking for advice. This shows that you are accepting of what is going to happen to you. This forum is a very valuable resource, and I'm glad that you jumped in and asked! I don't know how I would have coped had I known beforehand that my amputations were planned months ahead.

During the time leading up to the amputation, I would say that you should prepare yourself as best you can - mentally and physically. And you joining us here shows that you are well on your way!

All the best and keep us posted. :)

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Hi Mari, welcome to the forum, where I'm sure you'll find good helpful information, as well as from your professional help. You can usually bet, that if one doesn't have the answers, someone else will. I only wished it were here, when I needed some support and info about being an amputee, (10yrs in Feb) but never the less, I did find them and such a friendly group of people, it's kinda like having a second family. I can only say, talk and ask plenty of questions, even if they seem silly to you, they won't to the most of us, b/c we've all been through it and know where you're coming from. ;) A lot of what I did, was research on the Web, but after my surgery, which was very helpful. I didn't have time to do anything prior, everything just went so fast, which perhaps for me, was the best way. I do wish you the best of luck and please keep us posted as to how things are going, k? :D

Sheila lbk

Maine USA

Keep Smiling :)

post-12-1127004453.gif

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Hello Mari!

I was in the same situation as you only 2 years ago. I had my ankle crushed in an auto accident years ago and elected to have a RBK amputation. Unfortunately I didn't know about the drugs to take beforehand, but I am fortunate that I haven't had much pain since the operation.

I had an epidural and it worked great. Make sure that whatever is used it is what you are comfortable with. Don't let anybody railroad you into something that you don't want. It is your decision.

Wishing you tons of good luck and please keep us posted on how things are going. We're here whenever you need us.

Take care.

Caroln

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Hi mari,

First I woudl like to share a positive experience with you , something I know is the worst and hardest thing you can imagine. I have been an Right above knee amputee for 23 years. Along the way I married and divorced a Prosthetist and I have met many amputees along the way.

The amputee's with "Planned amputations" have a far less phantom pain, and in general less pain than before the amputation. Several of those people had an infection, others cancer and still others just wouldn't heal.

But every one of them told me after the amputation tath they were happy, and in less pain and general misery than before. Each one of them also said they wished they had not waited so long. But it is a terrible choice. It sounds like you have been through alot fo ___.,and I pray that the amputation will actually improve the quality of your life, by giving you back your mobilbity.

This is my expereince and I wanted to share it with you.

I ABSOLUTELY AGREE with the others.I beg you to see a pain sepcialist now,and take as much pain medication as you can stand, for at least a week before. They also should give you an Indwelling epidural catherer for a few days before the surgery(Perhaps you should enter the hospital before the surgery) to numb the spinal chord. I wish I had had the chance to have one. Maybe I would have had less pain.

search for a pain doctor that has experience with amputees, if time allows. Also, get the best mony can buy, you future comfort depends on it. There are good doctors and ther are average ones. You need a good one., one who offeres you an epidural, and a medication COCTAIL. One wiht opiates, muscle relaxers and perhaps Nuerontin

Welcome to our club, and I hope all goes well

Unique

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Hi Mari!

Welcome to the forum...my amputation was planned but had no idea where to turn for information, I wish I would have known about the forum before hand.

I hope you find all you are looking for and get what you need out of this forum...its a really good one, and a lot of people can help.

Wishing you luck.

Lesley

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Hi Mari, this time last year I was in the same position as yourself. One thing I had already done was find this website, the friends I made here certainly helped me through. I have not regretted having the amputation, I won't say everything is a bed of roses, but I'm no worse off than I was last year and I don't have the pain 24/7.

Like already mentioned start taking painkillers now. I had an epidural, which for me worked brilliantly, a general anaesthetic and now I just take a couple of neurotin each day for the phantom pains, which are getting better, some people don't get any at all, but I had suffered with bad pain for many years and the experts say this has a bearing on phantom pains.

No point in saying don't worry, because you naturally will, just be positive, things will be OK and we will be here to help you through.

Best of luck.

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SORRY TO HEAR ABOUT UR SURGERY... MINE WAS PLANNED ALSO... MY FIRST STOP WAS FINDING A PROTHETIST... THE PERSON WHO WILL BE MAKING UR NEW LEG AND FOOT... U CAN ASK UR SURGEON... U CAN ALSO GET SOME INFO FROM THE ACA.....AMPUTATION COALITION OF AMERICA.....

stipton@amputee-coalition.org

THIS IS SUSAN LIPTON'S EMAIL ADDRESS OR U CAN CALL HER AND SHE WILL SEND U LOTS OF INFO....PHONE # 1-888-AMP-KNOW.......

GOOD LUCK TO U....NANN

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Hi Mari and welcome,

I had my amputation after a total crush injury to the foot / ankle. I had a spinal block and general anaesthetic and was really surprised when I woke up that I had no pain. I had a few ops before the amputation and an external fixator too, after they tried to repair the damage.

I do have phantom pain, and take medication, but it varies from person to person, so you may have nothing - and I had a lot of ops and pain before the amputation too.

My main advice is to read as much as you can, ask questions here, from your surgeon and also maybe visit a limb centre / prosthetist - I'm sure if you rang and explained your situation, they would encourage you and offer advice and support too.

Good luck,

Sue.

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Here's the pain doctor!:-)

well i'll try to be clear without using too much technical language....

We have to manage pain BEFORE the op, DURING, and POST.

The severity of phantom pain is worsened by poor pain management before, during and after amputation.

Of course if you are in severe pain before op, a better pain management can prevent the integration of pain in the central nervous system which once activated is very difficult to close down. This is VERY important! To treat acute pain could be relatively easy, chronic pain is very diffcult to manage.....

During the operation...well the are lot of techniques; I prefere the one that could give you a good postop pain management: that means either epidural or peripheral nerve block with catheter and infusion of local anesthetics during the 3 days postop (I'm sorry but I have to remember from a scientific point of view that epidural have not been shown to decrease the risk of developing phantom pain...)

From the third day, if the pain score is ok, we manage pain with a mix of opioids and FANS if there is any evidence of neuropathic pain, otherwise we start with "neurological" drugs like gabapentin. Then we will see....

And remember....good surgical technique is really important during amputation, to minimize the risk of neuroma's growth in pressure points.

My two cents!

Take care,

s.

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sorry...my fault again! FANS is italian.... :blink: Non steroids antinflammatory drugs, NSAID, that means pain killers non opiates or steroids...

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