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Heather Mills - Amputee Forum
Harry

Hi All

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I'm new to this forum.

I live in Orange, Australia

I'm married with two boys aged 4 & 5.

I'm scheduled for a below left knee amputation on the 12th September 2013 (pending approval from insurance company)

I also suffer from Chronic Regional Pain Syndrome.

I roughly know what to expect but am open for advice on how to adjust both for myself plus family.

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Hi, Harry, and welcome to the Forum. Have you had your surgery by now? I'm confused by the timelines in your message...what's up and how are you doing?

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I'm bad

Sorry Cherylm

Let me start again

I'm new to this forum. I live in Orange, AustraliaI'm married with two boys aged 4 & 5.I'm scheduled for a below left knee amputation on the 12th December 2013 (pending approval from insurance company)I also suffer from Chronic Regional Pain Syndrome.I roughly know what to expect but am open for advice on how to adjust both for myself plus family.

I'm nervous, bit scared but all medical experts say my frame of mind will help me greatly in my recovery. (Being I except its for the best)

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Welcome Harry,

I'm also a little confused. Is the Chronic Regional Pain Syndrome the reason the docs want to remove your lower leg? I didn't know anything about the syndrome until I just looked it up on Web MD site. The condition sounds miserable. Are the docs able to treat you enough to let you tolerate the problem?

I was an elective amputee person back in 2010. I well understand your situation in that my ortho. docs strongly stated back in 2008 that an amp (right knee & down) or a fusing were my only options. I then had two years wearing a brace that immobilized my leg out straight that I wore all the time with the exception of sleeping or swimming. It gave me the experience to know what it was like to have a fused leg with a knee that was a time bomb waiting to get infected again. My leg immobilized drove me nuts! The fear of another infection scared me big time!

In the summer of 2010 I connected with a lady named Judy who had chosen a below knee amp after spending decades not being able to live her life due to a malformed foot. She wrote the attached piece and I hope you will read it. Her words summed up so well how I felt and how I wanted to live. My boys were a older, 16 and 14, but I was determined to reclaim a life where I could do active things with them again. I was feed up with being a recliner Mom for the prior 6 years..

A last thought for you is to make some notes now describing how your situation is affecting your life. What are you able to do, and not do, now? What do you hope to be able to do with a new foot? Their could be times after surgery that the thought "why did I chose this amp." will happen. It is perfectly normal feeling particularly during the early days. Keeping our original parts attached is the ideal. It just doesn't always work out.

Hang in there. Ask questions. Read, if you have time, the many, many, many conversations that are on this site. Folks from around the world have a lot of good info to share.

Jane

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I had a work accident in 2005 I shattered my tib & fib . I came of a ladder and left leg got all the impact (ankle dislocated aswell) I had staff infection and eventually developed Chronic Regional Pain Syndrome and also have a Spinal Cord Stimulator.

I have had numerous operations.

I have being in a Surgical Boot since 2006

I struggle to walk properely and keep up with my kids. I also struggle with a walking stick.

The chronic pain is not the reason for the amputation.

The reason behind it is I need better mobility and due to needing more surgery anyway I was asked to strongly consider amputation.

I have had about 5 different medical specialist opinions and they all agree it's for the best.

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Hi Harry, welcome to the forum. I noticed that you posted this under the heading Phantom Limb Pain and I wondered if that was one of your pressing concerns regarding the surgery and living as an amputee.

Must admit I don't really know anything about Chronic Pain Syndrome, but know that 'phantom pain' is a concern I hear from non amputees and I get questions all the time about 'if I get it' , 'different things people have heard cause it, etc. etc'.

When I became an amputee no one told about Phantom Limb Pain (PLP) and to all intents and purposes it didn't really exist in my vocabulary but what I've learned over the years is that PLP means different things to different people, including some healthcare practitioners who will readily identify any discomfort as PLP. For me, apart from initially after surgery when I remember being acutely aware of a painful non existent limb, as time went on, this changed to painless sensations, like wriggling your toes, but the feet don't really feel like they are 'not' there, if that makes sense.

Any other discomfort I have experienced over the years, is definitely in the legs themselves and usually caused by something going on in the legs or perhaps an ill fitting prosthesis, nothing phantom about it, though I have found if the nerves or nerve endings are affected directly then this again will give uncomfortable feelings of the non existent limb similar to what you'd experience if you'd recently had surgery and usually for me this is a signal to check things out, make sure the prosthesis is fitting properly and if it continues I get the stump checked out too, but, for me, there is 'usually' a reason for it, to me I just think of it as nerve or leg pains, although I find this is what is often referred to as PLP. This, for me, is usually short lived but, again, we are all different and experience things differently.

I am not sure if this is what you were asking about, but did notice you posted about phantom pain and it is a topic that comes up quite often, so hope this helps alleviate any concerns you have about PLP.

Do wish you all the best for your surgery on the 12th.

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I'm interested in all aspects as recommended by some amputees I have spoken to from limbs for life.

I was not sure what section to post under so just picked one.

This is al new to me and I just want all the knowledge I can get and hopefully it will give me the tools help me mentally (what I mean is I could mentally prepare if that's at all possible)

I appreciate all the feed back so far. and in my own confusion will make typing mistakes and even leave people puzzled and confused in my wording.

I appreciate all advice and even people asking me to be more clear.

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Okay, thanks Harry...that clears up quite a lot! :smile:

You've certainly been through the mill, and I can see the logic in looking at amputation. Since you've already been dealing with pain, let me offer up some of the current thinking on post-op phantom pain in amputees. A primary theory is that if you can be kept as close to pain-free as possible both before and after the surgery, there is less of a chance that phantom pains will develop. That can mean trying to have an epidural prior to the surgery and then keeping it in place for some time afterward. Since you already have a pain doctor in your "team," talk with them about your options on that front.

I went through with an elective below-knee amp about nine years ago...mine was due to a broken foot that kept breaking down after repeated attempts to repair the fracture. During that time, I was in constant, persistent pain. I turned out to be very lucky, myself...simply because I was too medically fragile to put under general anesthesia, I had an epidural stuck in place before surgery and was kept on major pain meds post-op...my surgery itself was done under local anesthesia. No-one was thinking or talking about phantom pains then...but the result was that I have had very, very few incidents of pain once the surgery was done. I know that not everyone is that lucky, and I'm very thankful for my basically pain-free existence.

You're looking at a major change in any number of aspects of your life...but losing a limb, while major and an ongoing challenge, can be a real improvement if you are already dealing with reduced activities and increased pain. I know that I do not regret my decision to lose my own left leg below the knee.

Ask any and all questions that occur to you...when considering amputation, there is no such thing as a "stupid" question. There are a lot of us here with a lot of experience to share with you!

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Thanks Harry, as Cheryl said it makes things a bit clearer as to the information you are after.
Fortunately, or perhaps unfortunately (depending on how you view things) I didn't have the chance to mentally prepare for my initial amputations also no previous experience of pain so can't really comment on how to mentally prepare yourself in that way. I did however have a revision amp many years later and then mainly prepared practically for what I knew would be the situation, but even as an already amputee the emotions did hit me at different points after the surgery and what I tried to focus on then was thinking about the reasons why I'd had it done and how it would benefit me enable me to be more mobile etc, and was definitely focussing on what I would be doing the following summer.

Am not quite sure whereabouts you are,as things are done very differently in different countries , in the UK even in different regions Think Cheryl gave you some good advice in talking to your 'team' about your options regarding pain relief etc. current thinking seems to be that our brains 'remember' pain and so if they can block any pain prior, during and after the surgery it will hopefully prevent the occurrence of future pain further down the line, so if you have been experiencing chronic pain in that leg for some time, that would be something to talk to your team about.

Other things to think about may be to start thinking about your home situation and how you will manage with one leg after the surgery and before you are walking with a prosthesis, though you may have things in place already to help with this, whether you will go home quickly from hospital, or have inpatient rehab etc. etc. Again different things are done differently depending on where you are, if you are in the UK it might be a good idea to visit a Disablement Services Centre (DSC) at a nearby hospital and find out about what's involved in the rehab, take a look at the type of prosthesis you will be given initially some people are given physio pre surgery to strengthen upper body muscles etc. etc. but probably similar to you are doing here and talk to other amps and finding out how they manage and finding out information.

Mobility post op is, to a large extent, dependent on getting well fitting prostheses, so probably for the best part of your first year you are probably going to spend quite a lot of time having prosthetic limbs/new sockets made, so will spend quite a lot of time sitting in prosthetic fitting rooms ,you may feel like you are going three steps forward, then one step backwards in terms of progress at times, or they may need to try different set ups as in the first year or so your leg/stump size will change quite dramatically as you shrink down from the surgery, so be prepared for that also, and to a certain extent for always you will be visiting prosthetic centres for adjustments etc It can be frustrating when things do not seem to be coming to plan as quickly as you'd expected them to, though as with everything, progress (whatever that is thought to be) varies from person to person, location to location, but generally patience, with yourself as much as anyone else, but don't worry most of us get a bit frustrated with the processes at times but things usually work out.

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Sorry folks, not sure how I quite changed the formatting in that post, so if it looks odd to you on screen and is unreadable, let me know and I will post again.

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Looks fine to me, Ann...... :cool:

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Hi everyone, I have been an AK amputee for almost 21 years.

I was passenger in a car, in a million to one accident. by rights I should have bled to death, but somehow didn't. And when I have bad times, I remind myself I'm better alive minus my leg, than dead.

I have had nearly 21 yrs of phantom pains - first I was prescribed some epileptic meds, which I ended up taking like sweets; then I had conventional analgesics which worked fine. I only took them when the pains were really bad.

When they stopped working, I went back to my GP, who has since prescribed gabapentin, and I haven't looked back since!! 4 months later, I have little niggles, but nothing like my previous pains where I used to shout out in pain. If ny UK members want any further info on my meds, feel free to ask :biggrin:

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