cate6
Female Member
Posts: 75
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Post by cate6 on Jan 14, 2013 4:38:56 GMT -7
Hi, My story in a nutshell: above knee amputee due to PFFD, 27 years of almost pain free living until 10 months ago when chronic pain set in. Many appointments and tests later I got the news, days before Christmas, that I have a tumour (and 2 other masses) in my stump, however due to all the examinations another problem has been detected and I'm facing further amputation. This will leave me with quite a short stump but I've been told I should be able to go back onto my current prosthetic leg once everything is healed. My concern is my recovery and the estimated 8 weeks I will be off work (I'm self employed). I live alone and have always been independent and I know I will be very frustrated during the recovery period. Have any other members needed to have further amputation? I feel that my near future is very much a case of the unknown
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Post by stonecutter on Jan 14, 2013 11:03:25 GMT -7
Hi cate6,
Welcome to the forums. Sorry to hear you're here for the reasons that you're here (if that makes sense).
11 months ago I had a revision surgery to fix up my (below knee) stump. They took out some extra tissue, closed up some crevasses and the re-shape required cutting a bit more bone out (about 1/2"). I was laid up for eight weeks.
Yours sounds a bit more involved than that, however. One thing that puzzles me is that you were told that you can go back on to your current prosthetic leg... they must mean everything but the socket?
As soon as you have surgery - the socket is toast.
Others here likely have better experience with revision / extra amputation than I do... I'm sure they'll be along shortly to give you some words of advice / reassurance.
Thanks for joining our little forum family. We're pretty friendly. Please keep us posted.
Trevor
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 14, 2013 11:34:52 GMT -7
Hi Trevor, Thanks for your reply and sharing your experience. Was your surgery successful? Did everything heal well? It does make sense that I can go back onto the same socket, I'm not sure I can explain this but all my weight bearing is at the base of my buttocks, the leg bears no weight at all...not sure if this is due to my pffd or not but I've been told as long as there is no severe shape change to the stump the same socket should be ok, there will be a bit extra space at the bottom of the socket but at the weight bearing position everything is the same. I hope that makes sense. I have to remember that I'm not an 'ordinary' amputee, ie my leg was not 'normal' before the surgery, however amputation is amputation and I'm going through the stages of emotions but I am trying to stay positive but I know I will need lots of support and support from fellow amputees will be much appreciated. I have to admit I'm concerned about the healing as I'm almost 30 years older than the last time, but I've been told as I'm healthy healing is expected to be good. I'm quite the opposite to you Trevor as they need to bring all the tissue from the back of the stump up to the front and they intend to shorten it 2-3 inches. I have faith in the surgeon, he knows what he's doing, however the waiting is getting me down. Surgery could be next month but nothing has been confirmend yet. I'm fed up and quite weary with all the medical appointments, but I can see a pain free future, hopefully by the summer I will be pain free (pain I have now) and surgery pain free. Again thanks for your reply
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Post by dawnbbka on Jan 14, 2013 13:05:15 GMT -7
Hello cate5 and welcome to the board. Sorry to hear of your situation. I have diabetes and have had multiple surgeries. Started out as two toes, then the ankle, then the first BKA then a revision and the same thing happened on the other leg. For me, it was another surgery with another healing period. I believe AKA's prosthetics work different than BKA's. BKA's control it with the knee whereas AKA's control it with the hip? So I can see where you may be able to use the same if there is no major changes. I would suggest to take it easy and let the wound heal up. Don't overdo it. I did and was laid up for a year after my second leg. Hang in there.
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 15, 2013 1:08:46 GMT -7
Hi dawn, thanks for your reply and sharing your story. I think I could probably be tempted to rush recovery and over do it but know that could cause all sorts of problems and the fact you said you were laid up for a year is a frightening lesson, so I will take my time and take all the help that is offered I have an appointment on Friday to discuss post op things and also have a new knee put in my prosthetic leg.
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Post by ann- on Jan 15, 2013 1:46:49 GMT -7
Hi Cate, welcome to the forum, though sorry to hear about the problems with your leg.
I have had a revision amp, but for different reasons, and, like Trevor, am a below knee, however I had some reconstruction also, in my case, I think they used good tissue on the side to bring underneath and up the back of stump. I thought the actual surgery pretty impressive, they had to join to old skin grafting on the front and the scar line is really neat and not caused me any problems at all. Initially, it was suggested to me that I too might have probs with healing because of the graft and my age, one surgeon told me to prepare myself to be a/k, and as I am bilateral I knew that might cause probs, so I went to another surgeon and this one seemed more confident in what he could do, so glad you have faith in your surgeon, because I think that helps tremendously. And I think, because I knew how crucial things were, I did follow what I was told what and what not to do, I was careful and did look after myself, pre-op I got some homeopathic input, I cut sugar, and managed to lose a bit of weight... though think thats gone back on now! But echo what Dawn is saying about letting it heal and taking it easy .... I was in hospital just over a week, but then told not to do anything really for another two weeks until I'd been back to outpatients and the bandage came off. For other reasons it was several months before I went through the processes of walking again, I started off on the pam-aide and it really was like learning to walk again. However, I had no problems with the skin and the scar, so maybe the wait that had seemed so frustrating at the time, worked in my favour.
Like Trevor, I am a bit surprised what they are saying though about wearing the same leg after the revision, they might be meaning though the same leg set-up, but will re-cast your socket. If they don't, keep a watch, because a socket which is too long, unless padded out, can cause its own problems, have had experience of this, and it's something you want to avoid.
Like you say for you, my revision was the first surgery on my legs for many years, well, since the initial surgeries, must admit I was terrified but did find everything had moved on a bit medically and it wasn't nearly as bad as I thought it would be. It did stir up quite a few emotions and memories though, so do be prepared for that, though at that time I felt I had the advantage of knowing that you got through it before so you can do it again.
Good luck with your appointment on Friday, hope everything goes well.
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 15, 2013 6:44:23 GMT -7
Hi ann, thanks for the welcome. I was told as long as there is no shape change this socket will be ok, but if that won't work then just a new socket like you are all suggesting, but if my leg is just going to be a little shorter there shouldn't be a problem. I was also told I shouldn't need to learn to walk again as movement is all from my hip...which I found out recently is dislocated (due to pffd) and the hip is sitting 5.9cm above where it should and it seems to have made it's own socket over time (quite unbelievable) but the consultant said it is secure and not likely to just pop out and as it's worked very well like this (he is impressed with the movement I have) for 40 years so he's reluctant to move it where it should be, he's basically said 'why fix what isn't broken'...to understand the level difference in my hip you need to know that with pffd I was born with an extremely short femur and I had an extension prosthetic leg from age 14 months until 13 years when it was amputated to a/k to allow for a knee joint. So, I'm not your regular two leg to amputee, I realise, however I have been very lucky to go so many years without problems and the fact I have this tumour and had it investigated meant that another problem I wasn't aware of was detected...hence the need for further amputation.
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Post by stonecutter on Jan 15, 2013 8:03:39 GMT -7
Hi Trevor, Thanks for your reply and sharing your experience. Was your surgery successful? Did everything heal well? Absolutely. I'm an idiot for not going for revision surgery earlier. Had some real problems that I didn't think were that bad and they were. There's a thread ( here) about what I went through (and the great support I received from all over the world on these forums)! I'm so glad you joined our forum. Please keep us posted!
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Post by ann- on Jan 15, 2013 8:47:29 GMT -7
Hi ann, thanks for the welcome. I was told as long as there is no shape change this socket will be ok, but if that won't work then just a new socket like you are all suggesting, but if my leg is just going to be a little shorter there shouldn't be a problem. I was also told I shouldn't need to learn to walk again as movement is all from my hip...which I found out recently is dislocated (due to pffd) and the hip is sitting 5.9cm above where it should and it seems to have made it's own socket over time (quite unbelievable) but the consultant said it is secure and not likely to just pop out and as it's worked very well like this (he is impressed with the movement I have) for 40 years so he's reluctant to move it where it should be, he's basically said 'why fix what isn't broken'...to understand the level difference in my hip you need to know that with pffd I was born with an extremely short femur and I had an extension prosthetic leg from age 14 months until 13 years when it was amputated to a/k to allow for a knee joint. So, I'm not your regular two leg to amputee, I realise, however I have been very lucky to go so many years without problems and the fact I have this tumour and had it investigated meant that another problem I wasn't aware of was detected...hence the need for further amputation. Understand Cate, and also understand regards the hip. Do hope all goes well for you.
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 15, 2013 9:38:22 GMT -7
Stonecutter, thanks for the link and I have read your thread and looked at your photos (although the 3rd didn't show). So how long ago was your surgery? And was the recovery time as estimated? Sorry you've probably answered these questions before. I have been told I will see my prosthetic fitter week 6 post op and she will assess healing and swelling etc and it's at this point we will know if my current socket is ok to continue using, if not a new one will be made, she said if all is ok I should be up and walking again by week 8. I sure will keep you all posted as I will need all the support I can get. Friends and family are very supportive but I find people fall into two categories 1) the ones who are shocked and cannot believe I have to go through it again (most of these were with me during the last time, ie close family and friends) 2) the ones who think I'll sail through as I have 'been through it all before' however, amputation is amputation whether it's first or second time, the loss is still present, the emotions still run high, the pain is still extreme...I don't suppose it's worth trying to explain things to these people. Ann, I think this is hitting me hard as I have gone so long without any problems since the first amputation (I've had various operations since but not on the leg). I know I will get through this, I know I will cope, with maybe a few tears along the way but I'll get there
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Post by ann- on Jan 15, 2013 10:23:10 GMT -7
Ann, I think this is hitting me hard as I have gone so long without any problems since the first amputation (I've had various operations since but not on the leg). I know I will get through this, I know I will cope, with maybe a few tears along the way but I'll get there I am sure you will cope very well Cate, and hopefully, like me you will find that medical techniques have much improved since last time. I had the same reaction from people as you've mentioned, some people were horrified I was even thinking about it, but once I'd made the decision and had the surgery everyone was very supportive, so am sure you will find the same.
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Post by stonecutter on Jan 15, 2013 13:53:02 GMT -7
Stonecutter, thanks for the link and I have read your thread and looked at your photos (although the 3rd didn't show). So how long ago was your surgery? And was the recovery time as estimated? Sorry you've probably answered these questions before. Don't be afraid to ask any of us anything! My revision surgery was on Feb 6 2012. They told me I would be off my feet for 6-8 weeks. I returned to work on day 56 - exactly 8 weeks later. Recovery went almost exactly as they expected it to. I was very determined to ensure I didn't have any complications - meaning I did pretty much exactly as I was told. I have been told I will see my prosthetic fitter week 6 post op and she will assess healing and swelling etc and it's at this point we will know if my current socket is ok to continue using, if not a new one will be made, she said if all is ok I should be up and walking again by week 8. Sounds like an appropriate timeline. Everyone is different and heals at different speeds. I sure will keep you all posted as I will need all the support I can get. Friends and family are very supportive but I find people fall into two categories 1) the ones who are shocked and cannot believe I have to go through it again (most of these were with me during the last time, ie close family and friends) 2) the ones who think I'll sail through as I have 'been through it all before' Most of my family were #2s. I didn't make a big deal about telling everyone I knew that this was going to happen though. I didn't want for it to be a big deal. A lot of people were shocked after I was back up and walking around with a cane... "What's up? Leg bothering you?" Then I would say I had surgery and they wouldn't make that big of a deal about it because I was upright again. however, amputation is amputation whether it's first or second time, the loss is still present, the emotions still run high, the pain is still extreme...I don't suppose it's worth trying to explain things to these people. Ann, I think this is hitting me hard as I have gone so long without any problems since the first amputation (I've had various operations since but not on the leg). I know I will get through this, I know I will cope, with maybe a few tears along the way but I'll get there As Ann said - I'm sure you're going to come out of this thing with flying colours. Try to think of this as something that is going to improve your quality of life... Something that will improve your condition. It'll take pain, tears, work and a lot of patience on your part, but you'll get there. I have no doubt.
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 16, 2013 1:06:54 GMT -7
Thanks so much for the words of support. Generally I'm positive about the whole thing, as you say it will improve my quallity of life, right now the fatigue is very frustrating, I struggle with work etc so yes I am positive but I have my down moments...I wouldn't be human if I didn't! Stonecutter, I know we are all different and we cannot compare one to another but I'm pleased to hear it's all possible within the 8 week time scale I was told. I was expecting a bit longer like last time, but I need to remember I won't be starting from square one this time. Again, thanks for support and replies, I feel welcomed, respected and valued
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 21, 2013 3:01:13 GMT -7
I had my appointment at the cllinic last Friday and as well as having a new knee put in my limb I had a meeting with the post op team. They wanted to make sure I was totally up to date with everything, re surgery. They've had several conference calls with my consultant about me and are due to have another one today. One thing I wasn't up to date on was the fact they are all concerned about the 'bowing' of my leg and it seems they want to straighten it again which mean the fixator...AGAIN!! I'm really not happy about this as this was the hardest part to deal with last time, however, if it needs to be done, then who am I to argue? It may well add a few weeks onto my recovery and a new socket will certainly be required post surgery. If this surgery means I can go another 27 years surgery free then bring it on!! I see the consultant again on Monday (weather permitting) so hopefully the whole procedure will be confirmed then.
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Post by happyem on Jan 21, 2013 12:59:09 GMT -7
Really sorry to hear that you've got yet another hurdle to overcome. Like you say, here's to another 27 years surgery free. Hope you get the answers you need on Monday
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 29, 2013 9:45:14 GMT -7
hi again, I had an appointment with my 2 surgeons yesterday and they are going to straighten my leg, but no fixator this time YAY ;D, however this is what they plan to do, break my leg and remove the knee cap (remember my knee is at thigh height) then rejoin the bones with a plate, so it's quite a lot they plan to do along with the further amputation and removal of tumour...oh and the investigations to see what other 'masses' showed up on the MRI. I had all my pre op tests yesterday, so it's all real now! Just waiting for them to fit me in, just got to wait for that letter to come through the door...eeek!!
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Post by stonecutter on Jan 29, 2013 9:49:36 GMT -7
Thanks for the update. I'm glad you don't have to do the fixator thing. I can't imagine what that would be like up around the hip area.
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 29, 2013 10:20:57 GMT -7
Thanks for the update. I'm glad you don't have to do the fixator thing. I can't imagine what that would be like up around the hip area. It's not much fun and even less fun on the inner thigh side, hence my relief at not having one again! I kept thinking 'what will I wear?' thinking none of my skirts or trousers would accommodate the frame, but that is one less thing to worry about...onwards and upwards, bring it on!!
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Post by barclay on Jan 29, 2013 21:46:57 GMT -7
Hope all goes well!
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 30, 2013 1:21:37 GMT -7
Thank you
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Post by ann- on Jan 30, 2013 2:36:33 GMT -7
Hi Cate, sounds like you have quite a journey ahead of you, so wishing you well and hope that they don't keep you waiting too long.
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cate6
Female Member
Posts: 75
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Post by cate6 on Jan 30, 2013 7:11:49 GMT -7
Hi Cate, sounds like you have quite a journey ahead of you, so wishing you well and hope that they don't keep you waiting too long. Thank you Ann. I don't expect the journey to be a smooth one but I have an amazing support network, friends and mothers of friends are cooking meals for me to freeze in preparation for when I'm home. I live on my own, and independence is important but I realise I will need help with some things. To quote my brother 'ask for help, no one will think any less of you' and to quote my sister 'you'll have to get over your pride and learn how to ask for help' LOL, I think my independence shows in these two quotes! ;D
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Post by ann- on Jan 30, 2013 7:53:40 GMT -7
Hi Cate, sounds like you have quite a journey ahead of you, so wishing you well and hope that they don't keep you waiting too long. Thank you Ann. I don't expect the journey to be a smooth one but I have an amazing support network, friends and mothers of friends are cooking meals for me to freeze in preparation for when I'm home. I live on my own, and independence is important but I realise I will need help with some things. To quote my brother 'ask for help, no one will think any less of you' and to quote my sister 'you'll have to get over your pride and learn how to ask for help' LOL, I think my independence shows in these two quotes! ;D Ahh ... glad you have some good people around you Cate. Your brother and Sister probably have the right idea and know its not easy to ask for help when we are used to being independent, but sometimes its necessary ... and sometimes also people just want to help .... so don't forget to take them up on their offers. Will be thinking of you, hope all goes well.
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Post by happyem on Jan 30, 2013 19:57:05 GMT -7
Hi Cate Wishing you all the best for the surgery and a speedy recovery. I know the independent spirit well but having a really solid support network around ultimately helps me to achieve it :-)
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cate6
Female Member
Posts: 75
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Post by cate6 on Feb 10, 2013 10:06:27 GMT -7
I've been in a lot of pain these last few days and the fatigue is so frustrating. I'm self employed and so glad I went on to part time (3 days a week) but the days are long 7.30-5.30, I'm managing during working hours then the rest of the time I just flop into my chair and rest. The hospital has been in touch to ask if I am able to have 24 hours notice for surgery, I can so I'm on the short notice list, it could be any time now, however there is no guarantee and I could still be waiting weeks. I just want it all over and done with now so I can get on with my life, so I can plan things, so I can make plans for my birthday and a holiday etc etc
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