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Cakepigeon

Hello!

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Hi everyone, I am new to the forum and am currently waiting for an elective left ankle amputation due to be done in September.

I am 42 and myself and my husband had a motorcycle accident 7 years ago. Hubby got the serious life or death injuries including a broken neck, broken femur and lots of internal injuries and I got the long term injuries which was a dislocated compound fracture of my left ankle. They actually found my ankle bone in my motorcycle boot! Ewwwwww!

Thankfully hubby is a true fighter and has now more or less made a full recovery. I though have had 9 operations to repair my ankle and to save my foot, including skin grafts etc. Now though 7 years on the osteoarthritis resulting from our accident, has got so painful along with the severe nerve damage I have, that I am virtually unable to walk.

At 42 living like this is just not an option for me, I still want a life and at the moment I just don't have much of one. I want to be able to run around with my grandchildren, take my dog for a walk and take walks with my lovely hubby!

So in March when I saw my specialist and he said my only option to be pain free was to amputate the ankle, I didn't have any hesitation in agreeing.

I now have my pre-op appointment with my surgeon on 14th August and have been put on the list for the surgery for September.

I can't wait to have to op but I am also as scared as hell as I am sure every pre-amputee is so any advice on coping before and after the op is very much appreciated.

Thank you so much to you all! :-D

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This is of course the last resort for most people that have suffered this type of non-healing injury and a hope for a better life. I would like to add that a doctor making the comment that you will have a "pain free " life after amputation. Many do, but knowing what I know now, I would have had my initial amputation done the way I had my revision surgery amputation performed.

I would highly recommend reading about the ERTL procedure. There are posts here and you can simply Google ERTL for more in depth information on the procedure.

My avatar shows the results after of my revision which was an AK ERTL. I am able to ski on two skis and am mostly pain free. The real ERTL procedure is mostly performed for BK's.

It is very important that you do your homework on the surgeon/surgeons well before your operation and insure all proper steps are taken to mitigate future pain

For instance, I had really bad phantom pains after my initial amputation. For my revision, I had an epi-morph so my body would not feel any trauma during the bone, nerve and muscle cutting. This may not work for everyone but it sure did for me, no more Phantom pain.

I do not mean to make you worry, just wish I would have had the chance to seek advice and to research a bit prior to my first amputation but I was unconsciousness and it was a life or death matter at the time. When I hear a doctor give a broadbrushed statement "pain free" it just annoys me.

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Hi Cake Pigeon--what a great handle.

I admire your courage and even more so wanting to get on with life. About 10 years ago I was in a car accident and it sounds like my ankle injurgy was very similar to yours. I went through three years of surgeries and although the surgeon was great things would only work for a couple weeks and then something else would go. So, like you I opted for an amputation (RBK) and I have never looked back. It took me a while to get the doctor to agree to the surgery--I really wanted him to do it, but would have gone elsewhere. The first year was a bit tough, there still was some pain and adjusting to walking etc was difficult, but with perserverance I am dooing great lincluding doing a whole house renovation 95% by myself and I am back to rock climbing.

You might look up some of the articles (sorry I do not have them to give to youi) about being totally pain free for 2-3 weeks before surgery (medication). It was suppose to cut down on phantom pain and for me it has worked well. Only time I have phantom pain is when my leg needs adjusting. You sound like you have a great doctor, so maybe you could talk to s/he about it. Also, a strong suggestion: the Amputee Coalition (US) has great information on its website (http://www.amputee-coalition.org/).The biggest turning point for me was attending the Amputee Coalitions big meeting. It is scheduled to be held next July in Tucson, AZ--it would be great if you could attend.

Blessings as you await your surgery. Just don't get your hopes too high for after the surgery as it takes time (some say a year or so) to adjust physically and mentally to having an amputation, but for me it was well worth the time and effort it took.

Peace, Beth Marie (Canada)

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Thank you both so much for you advice, I am a very realistic person who doesn't expect to be pain free straight away. I fully appreciate i will have a good year or so or painful difficult times.

Thank you especially to you Beth Marie, it is comforting to hear that you have never looked back at your decision and have achieved so much! I admire you immensely and really hope I can get to where you are now.

I live in the UK so unfortunately I won't be at the Amputee Coalition meeting. There must be something like that here in the UK so I will do my homework.

Thank you again x

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Hi, Cakepigeon! Sorry I'm late to the discussion, but it sounds like you've gotten some good advice. I'm also an elective amputee due to massive complications following a fracture of my left foot. I didn't have the patience that you and BethMarie have demonstrated...after about a year and a half of repeated surgeries and constant pain, I went through a below-knee amputation. It was, absolutely, the best thing I could have done. It did take me quite a while to recover, but I've been living an active and basically pain-free life for over nine years now. I know the idea of "volunteering" to lose a limb can be scary, so I won't say "don't worry," but I think you'll find the increased mobility well worth the trade-off!

Do, do, do work with your surgical and medical teams to do all you can to go into surgery pain-free and to stay that way as long as possible afterward. There are enough of us out there to make a convincing argument that this provides the best chance of preventing future "phantom" pains. Also, if you can start talking to a prosthetist now, so much the better...it's always less frightening if you have some idea of what's going on.

I hope a couple of our Brits check in with details on "your" system. I do understand that many limb centers have support groups, which can be a great source of information and assistance. (We also do have folks from other parts of the world attend the Amputee Coalition conferences...I know of at least one who came from Australia...but I admit that this is not necessarily the most practical way to gather information!)

Keep checking in to let us know how you're doing and to ask any questions that come to mind...we're a chatty group and we like to help........... :biggrin:

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Hi Cakepigeon, Sorry, I am a bit late coming to the discussion too, and does sound like you've had some good advice already. I am an amputee living in the UK, and like Cheryl says, there are support groups over here that, hopefully, might be able to support you pre and post op.

Most prosthetic centre's/DSC's (Disablement Services Centres) in the UK will have some sort of user group, usually they are based around the prosthetic centre. Some are more active than others, depending on the size and organization etc. etc., but most will offer some sort of peer support, perhaps group meetings, get togethers, coffee mornings, etc. etc. We also have the Limbless Association (LA) http://www.limbless-association.org/ and there is loads of info on their website, plus also offer volunteer visiting support. If you wanted to make contact with someone, and wanted to private message me of your whereabouts, I would be happy to try and put you in contact with a local group or amputee from your area.

I noticed on here someone mentioned about the ERTL procedure, which might be difficult to get in the UK I am not too sure whether they do this here now or not, but the advice on working with your surgical team is good, with a little bit of luck they are already in contact with your prosthetic team or will be familiar with the optimum procedures that allow the best for you regards the prosthetic side, they may very though already liaise with rehab consultants and prosthetic teams on this, but its worth asking about it. Also regards anaesthetics, epidurals, etc. etc, as others have said, current thinking is that staying pain free might help prevent future nerve related pains. Not sure if you are going down the NHS route or private, things might be done a bit differently, but it might be worth, if you've not done this already, seeing if you can visit your local prosthetic centre, maybe talk to the rehab consultant, prosthetists and other amps about their experiences, have a look at the prosthetics etc. etc. ... as Cheryl says "its always less frightening if you have some idea of what's going on". You might just be able to ring up and arrange this, or you might have to be referred via your GP, though if your op is not until September, you probably have time to do this.

I think its probably pretty normal to be scared, I have been an amputee since I was young (so know its all do-able!) and didn't have to make the decision you are but have had a revision amp and was pretty scared myself then, even though I was very used to living as an amputee, however, I don't think that it will be as bad as you are probably imagining, though as Beth says "don't set your hopes to high to start with" you might have up and down days to begin with, your leg will take time to heal and the rehab and prosthetic fitting side can be a tad frustrating sometimes but you will probably get to know your prosthetic team very well in the first year or so, whilst you and your leg adjust to a new way of walking.

Keep checking in and let us know how you are doing, as Chery says "we're a chatty group and like to help", if I can put you in touch with any groups in the UK or can help in any way, feel free to message me on here.

Ann

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Thank you for all your advice, its great to be able to talk to people who have already been through the operation as it gives me more of a realistic expectation.

I have an appointment with my surgeon next month to discuss the operation so I will be asking lots of questions.

Thanks again guys! Xx

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