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Post by dadbloke on Jan 31, 2018 6:52:50 GMT -7
Hiya,
My name is Andy, I'm 45 years old and I live in a little village in deepest Leicestershire with my Wife and two little boys. I'm due to have my Right Leg amputated above the knee on March 13th at Walsgrave Hospital and I'm currently in the acceptance/terrified/confused stage.
My surgery is elective and it's taken me 3 years to get to this stage. At first nobody would take me seriously but they've listened at last and now agree that my quality of life would be greatly improved by getting rid of the useless leg. I won't bore y'all with the details, unless asked, but trust me when I say that taking my leg off is a positive thing, [hopefully]
I have very little knowledge of these things. I've been to a prosthetic clinic-place and they've looked at me and said I'd be suitable for a leg if and when I recover sufficiently. They tell me that 80% of people don't get a new leg as they give up trying to walk. By all accounts it's really hard? I'm determined to walk with a prosthetic but don't know anything about them. Would a mid-thigh amputation result in a leg with a knee joint or is that TBD once they see how I get on? Do those things even exist?
I'd love to hear from others who have had this operation. I'd specifically like to know how you felt if it was elective. Did you spend the weeks leading to the operation with it constantly on your mind? Did you get to choose to be awake or was that the anaesthetists decision? [I'd like to be awake and have the operation done via a spinal block] did you consider your own mortality? I have a million questions and whilst I know that your answers won't apply to me, it would be nice to know I'm not alone in being terrified one minute, quite calm the next and morbid as balls the next! All I know right now is that I want my leg to come off, but if I could press a button and skip to the bit where I'm waking up in recovery, I would!
How long is the hospital stay post-op? I'm a same-day operation. I need to pitch up for 7:30am and will have it done that day, hopefully. Will i be hanging about all day or will it be a case of walk in, be knocked out (or not) and be supping on a nice brew, minus a leg, within an hour or two?
Gah! Sorry to waffle! If you can think of a question, I'm probably asking it. I've not been given any information about the surgery itself, just told that it'll be done and to turn up. I've been looking online but I'm not sure that's the best idea to be honest. A real person would be ideal, if there's anyone out there who can answer, or try to answer some questions, that'd be grand. Cheers!
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Post by stonecutter on Jan 31, 2018 12:43:32 GMT -7
Hey Andy,
It's natural to have these questions...
We have heard the story about doctors not taking the wishes of the person living with an issue a lot around here. I didn't really have that issue as my amputation was the result of an industrial accident and there wasn't much of a choice (as far as I was concerned anyway...). It's sad that you have to fight for a solution and I empathize and am a bit frustrated on your behalf.
I'm a below-the-knee (or BK, or BKA) guy, so (as you can imagine) I still have my knee. Our prosthetics are substantially simpler than aboke-the-knee (AK, or AKA) folks. Above the knee *usually* involves an articulating knee integrated into the prosthetic. The type and complexity of the knee will have varying results when it comes to appearance and walking gait for the wearer. I've seen AK folks with a severe and purposeful swing of an old-school knee that very swiftly and in some cases noisily kicked the foot forward in the step and I've seen more complex knees that provide very natural movements. I'm sure there'll be some AK folks along to fill you in more, because honestly - I'm not a subject matter expert on AK parts and pieces.
Awake / Not awake during surgery: When I had my surgery (1994) I wasn't given the choice of awake / not awake. But when I had a revision surgery in 2012 I was given the option. Everyone is different, but I'm a bit squeamish. I told the doc that if they weren't going to put me out the deal was off...
My own mortality: my leg wasn't my only issue - I had a severe infection as a result of my injury. I wasn't aware until after I was out of the hospital that I was in serious trouble at one point with the infection. But things turned around. I didn't really have a fear that I wouldn't wake up from one the of the surgeries (I had 6 initially). I saw the surgeries as a way to work through solving my injuries. I just wanted it dealt with so I can get on with life.
How long is the stay? - for me I was in the hospital for three weeks prior to the amputation and three weeks after it. But everyone is different. When I had my revision surgery, I was in the hospital for a total of three days / 2 nights. Recovery time for both (to the point where I was walking with a prosthesis, albeit with the assistance of a cane or crutches) was about 8 weeks.
I am Canadian. Here there are lots of pre-examinations, x-rays, physicals, meetings prior to an operation like this unless it's emergent. Feels like just everyone's trying to make their $$ off your case. So we get some pretty good detail of what they're going to do. Some of them I tell them - just do it - I don't really want to know. Online research can be good, or it can be disastrous. It depends on how squeamish you are I guess. When I'm faced with something like this - I want to know all about the doctors. I spend some google time on their names and see what their reputation is. I also found that surgeons with bad bed side manner are usually the best in the surgical suite. In a case like ours, I'd rather have a surgeon do very well on my limb rather than worry about my feelings - provided I'm kept informed about progress and what's happening.
Feel free to ask your questions! This is the place to do it!
Keep us posted!
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Post by snowyh on Feb 1, 2018 4:16:50 GMT -7
Hey dadbloke, kudos for being so proactive about your surgery! I'm an arm amp, so not the best person to take a stab at your questions, but here I go anyway.
They tell me that 80% of people don't get a new leg as they give up trying to walk. By all accounts it's really hard? Arm amp says: My experience is that most leg amps prefer to use prosthetics or crutches to walk (at least people below retirement age and at a reasonable weight). The wheelchair is for backup.
Would a mid-thigh amputation result in a leg with a knee joint or is that TBD once they see how I get on? Do those things even exist? Arm amp says: It's my understanding that all above-knee prosthetics come with knee joints.
I'd specifically like to know how you felt if it was elective. Did you spend the weeks leading to the operation with it constantly on your mind? Arm amp says: My amputation was not elective, but I had plenty of time to think about it before the surgery. And yes, it was constantly on my mind! In every action, I was consciously thinking, "this is the last time I'll...". I gazed at my arm and all its parts with wonder. I even said goodbye to it and thanked it for its service!
Did you get to choose to be awake or was that the anaesthetists decision? I'd like to be awake and have the operation done via a spinal block ARE YOU NUTS?!!! If your (or any) doctor even considers allowing you to be awake during surgery I'd be surprised. IMO this is definitely an experience you don't want to have consciously nor remember so you can relive it again and again! They're going to use a bone saw, you know...
did you consider your own mortality? it would be nice to know I'm not alone in being terrified one minute, quite calm the next and morbid as balls the next! Hell, yes (and no)! I definitely considered my mortality, though more because of the cancer than the amputation. The experience actually started me on a spiritual quest, and it's been a wonderful journey that I may not have ever had otherwise. Specifically regarding the amputation, I didn't go through the terrified/calm rotation. I remember feeling kind of like I was strapped down on a conveyor belt moving slowly toward my fate, with no way to change either the direction or speed.
How long is the hospital stay post-op? Will i be hanging about all day or will it be a case of walk in, be knocked out (or not) and be supping on a nice brew, minus a leg, within an hour or two? Arm amp says: I think I was in the hospital for 5 days. That was 45 years ago and although technology has advanced since then, the human body still needs time to heal a bit under observation before being shipped home. Pack a bag.
I've not been given any information about the surgery itself, just told that it'll be done and to turn up. That's completely unacceptable! I'd recommend scheduling a pre-op office visit with your surgeon to ask all your questions, and if he/she refuses, change surgeons!
Helen
PS--You get extra points for knowing where the apostrophe goes in "y'all"... especially impressive because you're not from Texas!
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Post by cherylm on Feb 1, 2018 4:23:24 GMT -7
Hi, Andy, and welcome to our little group! Trevor gave you a very good overview of his situation...I'll just throw in a few odd and ends where my experience was a little different. (That's "Amputee Rule #1" -- Every amputee is different.)
I'm more like you, in that I spent a long time with doctors trying to preserve my foot and leg and I was (more or less) relieved to see the leg go at last. And for me, losing that leg made a genuine improvement in my life and mobility. Now I am also a BKA, so I'm not going to try to guess on the types of prosthetic legs/knees you might end up with. Also, I'm in the U.S.A., and "our" recovery routines seem to differ a bit from folks in the U.K.
You're young and unless there's some unusual additional concern, you certainly ought to be able to walk well in a prosthesis. It is somewhat more difficult for an AKA, just because you've lost an additional joint so your new leg will be heavier than a BKA's limb and you'll need to learn how to manipulate an artificial knee. Amputees in general expend more energy than folks who don't need to move a prosthetic limb...but it's something you can adjust to and in time becomes natural to you.
As far as anesthesia goes, talk to your anesthetist in advance. My own amputation was done with a combination of a spinal block and twilight sleep because of additional medical problems. It worked well for me.
Your mental state is entirely normal. It may not make sense to family or friends--or even to YOU--but you're doing something that you know OUGHT to improve your quality of life, and it entails a major surgery and learning to make a major adjustment to your life. Who WOULDN'T be in an emotional whirlwind? Once you're through the surgery, and focusing on your rehab, your path forward will be more clear.
DO continue to ask questions...you're brand-new at this entire endeavor and can't be expected to know everything. When you're a new amputee, there is no such thing as a silly question, so ask away!
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