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Hi from pre-amp in uk

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Hi I'm mike from Cornwall uk 35 married with 2 skids one 5 (boy) with ADHD and asd. And a gorgeous daughtet 14 months. Had a crush injury 13 yrs ago led to compartment syndrome and wastage of all muscle below the knee. Had a triple fusion and reconstruction of the leg but failed and been in pain since finally my surgeon decided next steps as either another reconstruction with a izzurus frame or a below knee amp.

I been through enough pain I can tell you and having a son as much as I love him he is challenging and running wild the idea of a frame for six months seemed hell and rather just get it over with and decided on the amp.

Not been told to much about it tbh, seen legs at the DSC and found a little info but not loads about.

I was sent to a plastic surgeon from the DSC as the damage is pretty bad so thought best to bulk stump out and fix few pits and scar tissue.

Plastics said it is an extra 8 hrs as no salable muscle from leg and would need harvesting elsewhere.

Go back to original surgeon he now wants plastics with him and will happen straight after Xmas.

Not nervous looking forward to it but my wife I worry about and kids as I'm the strong one with kids and we live rural.

Essay or what lol

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Hi there Mike and welcome to our little corner of the world. For those of us in the USA, we're just coming off a long holiday weekend, so that might account for the lack of replies on this end...don't know what's got our Brits distracted, but I'm sure you'll start getting some responses soon. :smile:

I'm an elective left below-knee amp myself. Have been for almost nine years, now...suffered a bad break in my left foot that kept breaking down every time they thought they'd gotten a repair and good healing. Yeah, the pain was not fun, and eventually the foot broke down one time too many and I developed a MRSA infection. After that got cleared up, I was offered a choice kind of like yours: re-try the longest-lasting of the previous repair attempts and keep me in a cast for many, many more months than what is considered "usual," or do the LBK amputation. It took me only about an hour to decide that I needed to lose my foot in order to reclaim my life. For what it's worth, I've never regretted that decision.

It sounds to me like having a plastic surgeon involved might be a good thing, considering the extent of your previous injuries. My own amp was done by an Ortho, but I didn't have major issues at the site of my surgery. I've heard good things about Plastics and creating a limb that will be good for walking with a prosthesis.

Do try to educate your self as much as possible about what you're going to be facing. Don't be afraid to ask questions of your doctors, ask to meet with a prosthetist, and, if at all possible, see if you can meet some other BK amps...just seeing how others get about and being able to get their input on "how to get on with life" can be a tremendous reassurance. And post any questions that come up here as well...when you're facing such a drastic change in your life, there is absolutely no such thing as a "stupid question."

You're young and you deserve to be able to be active and enjoy your kids...and for your "basic BK amp," that's a real, attainable goal. Hang in there...you'll manage it!

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Thank you for your reply appreciated.

Agreed a big decision but feel the right one rather than more reconstruction.

I saw preamp doc she was brilliant explained legs to choose, nothing fancy but I'm told better than they used to be. I chose the exposed bar type with carbon top print.

Not allot in the uk info wise which seems strange!.

I just want to be more able and do more with the kids that would be great if I can.

Sounds like you had hell of a journey with Mrsa too not good nasty stuff.

Mike

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Hi Mike,

I read your post yesterday but didn't have time to write! I am sort of elective as an RBK-I had hoped to save some of the foot but eventually told the surgeons to 'just chop the b****y thing off' as it was causing so much trouble. I can't pretend it's been an easy time since, but now I am up and walking I would just say that dealing with the UK prosthetists can be difficult sometimes. Since the cutbacks we seem to get even less choice and if you want to move to another centre you will have to get yourself there and back as transport is sometimes not funded. Your stump will shrink over time and you will need to have your leg recast: depending on where you live that can be a good or frustratingly annoying experience! I would advise you to check out your prosthetic centre through its User Group (if it has one) to find out any local problems. The professionals are not often amps themselves, so it can get frustrating at times! Don't be afraid to say if the leg is uncomfortable or painful - and keep on saying it until they get it to fit properly. Hopefully this wont be a problem...but in the early days it's hard to know what feels 'right' and what doesn't.I found the most important thing is to keep positive. And the help of a loving family is immeasurable.

This forum is a wonderful place to feel sane, amongst people who understand exactly what you are going through and who are very supportive. Check out Mick's walks with his dogs to see how active amputees can be!

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Hi Mike

Just wanted to wish you good luck with your op.

I am a UK amp, didn't have to make the decision you're having to make as my legs were amp'd following crush injuries immediately after an accident, but do know about living life as a below knee amputee and don't have too many complaints about it really, my life has been pretty good. I am also mum to three, now grown up children, who know nothing but their mum being an amputee and as children they often accompanied me at prosthetic fittings and took it as pretty much normal really. I don't think I missed out on too much being an amputee mum and though they might well have their own opinions, I don't think they missed out on too much either, we are just a normal family and they seem to have grown into reasonably adjusted adults, so everything is possible.

As Kate has said, there can be frustrations along the way. Having had revision surgery a few years back I would probably say the time between the surgery and prosthetic fitting probably the tedious bit, though you will be eager to get going on your prosthesis, get the healing bit right and the prosthetic fitting will be easier and everything does depend on that prosthesis/socket fitting you correctly. As Kate also says, the first year or so your leg will be shrinking, you will probably be back and forth for numerous socket fittings but it does all settle down gradually and when you look back in six months or so you will probably be amazed at how well you have progressed.

Like others have said, find out as much info as you can, I think its pretty much routine in the UK now for pre-elective amps to visit DSC's, talk to rehab consultants, prosthetists etc and meet other amps and learn about their experiences, ask also about the type of prosthesis you are likely to be given initially, think it always helps to know but remember the first type they give you doesn't automatically mean that's the only type you will use, there will no doubt be many changes over the months and years to come.

Hope all goes well for you, ask any questions on here and don't forget to let us know how you are doing.

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Hi Mike,

I am in Uk. I had 30 operations to try to save my leg...including wearing a full leg Ilazirov frame for 18 months, turning the bolts every 4 hours.....it was a nightmare! I opted for above knee amputation after the fusions failed.

I had my amputation 8 years ago, I ended up having 6 further surgeries after amputation because of other issues. I too had closed compartment syndrome, I did not have the information that you have, from the consultants you have seen, ie muscle salvage etc. it seems clear to me that your amputation is not a straight forward one. I think that if you decide to go ahead with it you must accept that it is not going to be an easy process, you probably won't have you amputation, heal, get fitted with leg and walk within the normal time period, ie a few months. Your journey is going to be a hard one. Sounds like you have decided already. I guess I just want to wish you and your family the best possible outcome for you, it will be a hard journey for you all. If you are aware of that initially it may help. I remember having such high expectations, get rid of leg, get rid of pain, more mobile. I looked at active above knee amps and thought that would be me after my amputation. I was wrong, lots more surgeries, failed leg fittings, spending thousands trying to get fitted. Now having to accept that although after 8 years I have a leg I can wear, I can only wear it for short periods of time, I can't walk without crutches. I am not being negative, just stating my facts. I really do hope that your amputation improves things for you, just be realistic about your personal situation and complications and make sure you have the right people on board both medically and personally. The very best if luck to you. I would not wish an Ilazirov frame on anyone so, either way you would have a hard journey ahead of you.

I don't frequent this site often these days but just wanted to reply as my situation is so similar to yours except that I am above knee amp.

Keep us up to date with your progress. Good luck.

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Hi Mike,

I'm so sorry to hear about your situation and really hope things can get better for you and your family. My medical history was different than yours but the choice to amputate was in the end mine to make. Like you have written I felt I was missing out on life with my boys and I was sick of living in pain and dread of what another infection might do. Having a Mom alive but lacking a leg was better then no Mom at all. I'm now three years out from my amp (through knee) and I am glad I did it. Not always, but for the most part yes.

Talk to others, read the many stories on this site. There won't by any one person answering every question but from the many folks who are from all around the world there sure is a lot of experience and knowledge.

Hang in there, best of luck!

Jane

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Thank you all so much thank you for your time really appreciated.

I'm still waiting due to a mix up of pregabalin but getting there and hoping to get this over with soon and to close a chapter and power another in life.

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Lost my leg in about the same way, it was a crushing accident at my work. Had a steel bar roll off a fork lift, and two weeks later due to compartment syndrome they amputated above knee. It has been five years next month and getting along pretty well. Have been on my current knee for about a year.

hang in there.

Any questions feel free to email me jamesrwolf@gmail.com or post here.

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Lost my leg in about the same way, it was a crushing accident at my work. Had a steel bar roll off a fork lift, and two weeks later due to compartment syndrome they amputated above knee. It has been five years next month and getting along pretty well. Have been on my current knee for about a year.

hang in there.

Any questions feel free to email me jamesrwolf@gmail.com or post here.

Thanks Snuba.

Just got my pre-op for March at special request so hoping to get in there soon as been longer than expected.

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Hi Mike,

Hang in there, reach out to any of us as you need. The choice to have an amp is rather unique in this world but it does happen. It is nothing anyone would wish on anyone else but it happens. Coping with it isn't always easy initially - even when it is a choice - but the options it can offer going forward can make it worth it. Time with family and friends can make it worth it. It can be a leap of faith that it will but hang in there.

Jane

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Best of luck to you...I hope it all goes extremely well and you're back up and around soon! :biggrin:

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Good luck ..... hope all goes well, seems like you have had a bit of a wait, so am sure you will pleased to get it over and sorted now.

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Quick turnaround, there! How are you doing?

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Quick turnaround, there! How are you doing?

I'm doing well thank you.

Some itching under bandage and seem to sleep one whole day and be full of beans the next day. But all good, so far!

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Really glad all went well with the op and you are now home again. I would say, look after yourself and that leg at the moment, let it heal and don't rush things too much, it pays in the longer term to get through these first few weeks without bashing it etc. etc., so follow all the hospitals instructions, even though you are probably wanting now for time to pass and to get on to the next stage of getting a prosthesis fitted.

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Really glad all went well with the op and you are now home again. I would say, look after yourself and that leg at the moment, let it heal and don't rush things too much, it pays in the longer term to get through these first few weeks without bashing it etc. etc., so follow all the hospitals instructions, even though you are probably wanting now for time to pass and to get on to the next stage of getting a prosthesis fitted.

Very true I'm itching to get going and starting a new chapter

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Update guys ive now been on a prosthetic for a few months no major issues. Couple blisters have a ottobock trias foot which seems good for my first leg.

Still not walking to far but getting there

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