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    amputation after paraplegia

    Wouldn't you know it, 55 years post to the first really bad fall. It happened about two months ago, and after six weeks in a brace we find that the unstable compression fracture on & just above my right knee is very probably not going to ever heal. To complicate matters, in 2015 I underwent a Girdlestone procedure on the left leg which left me without a proximal femur. That prior surgery loused up my transfers royally; before I could manage transfers pretty much anywhere but afterward they were restricted to bed <-> wheelchair.

    The orthopedic surgeon dealing with the fracture has suggested three possible treatments, two of which even I see are unlikely to succeed. That leaves above-the-knee amputation as the surgeon's best suggestion. And since the left leg is apparently of "no use", the surgeon is of a mind to amputate that one also.


    To the doc's advice I've added my own option: To go home without any surgical intervention, hire a strong PCA to help with the necessary transfers, and hope for the best.


    The underlying issue is, of course, which course - amputation or winging it - has the best chance of my regaining respectable transfers & balance without in the process incurring gluteal (such they are after 50 years) pressure ulcers?


    Everyone is different, and I don't expect paras who've faced the possibility of amputation for different clusters of reasons to give me specific advice; but it would be nice to hear the decisions and experiences of others in similar situations. I did search through CareCure; the latest posts re amputation (from 2015) reinforce my own view of the cons of amputation for ancient paras. Maybe some of those posters can update their experiences here? - fw


    #2
    Can you go to another orthopedist for a second opinion, or see a doctor that specializes in osteoporosis and fractures? This might be an endocrinologist or rheumatologist.

    I ask because my father had slow bone healing after his accident - a terribly fractured leg and back. He wasn't fully healed for close to a year after his accident. He was put on the medication Forteo, which was initially started because he also had osteoporosis. But the Endocrinologist who he saw for treatment of his osteoporosis also told us that the Forteo would speed up the healing of the fractures. In fact, that is how she argued to his insurance that he should switch from his prior treatment for osteoporosis - Forteo is known to promote bone healing.

    And sure enough, his fractures healed quickly after that.

    I suspect you have osteoporosis, right? Maybe you need to see a doctor who treats osteoporosis and ask about this possibility.

    Of course, I don't know what is going on with your fractures, what they look like, what other medical issues you have... But 6 weeks is not very long at all. My gut would be to give it more time and think about other options.

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      #3
      Originally posted by hlh View Post
      Of course, I don't know what is going on with your fractures, what they look like, what other medical issues you have... But 6 weeks is not very long at all. My gut would be to give it more time and think about other options.
      My gut is *screaming* the same thing. Gather more opinions and take your time thinking about options. Don't be rushed into a decision.
      MS with cervical and thoracic cord lesions

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        #4
        Fifth cycle of osteomyelitis in my left foot. I am getting tired of it ... amputation is seeming a better option, now that I don't work or go out much. Rather just be done with it. In Windsor, they'd be happy to do that. In Toronto, they're against it.

        It's ultimately up to you.
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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          #5
          Above-the-knee amputations can have serious consequences for transfers, unlike ankle amputations - the issue is one of balance and "ballast." Second and third opinions sound like a good idea to me, not only from doctors, but from PTs/OTs.
          MS with cervical and thoracic cord lesions

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            #6
            That leg serves as ballast and plays a major role in maintaining balance, etc. Did the doc consider putting a pin and other hardware in the femur? Are you using a bone stimulator? I have used them with my femur fractures (3) and I believe they help. And I agree that 6 weeks is too soon to make a decision about the leg and that a second, or maybe even a third opinion is warranted. Youshould have some good orthopedic surgeons up there. Finding them is difficult.
            You will find a guide to preserving shoulder function @
            http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

            See my personal webpage @
            http://cccforum55.freehostia.com/

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              #7
              Thanks for the illuminating and encouraging replies, folks! I also much appreciate the previous threads on this topic as I've wandered around the forums. Care Cure is a great community! I'm still investigating this issue, while taking the time to make my own decision. I'll report back when I've made that choice. - fw
              Last edited by firewheels; 24 Apr 2018, 10:10 AM. Reason: Added some stuff

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                #8
                One of my original injuries (when I got paralyzed) was distal femur protruding from leg.
                The orthopedic surgeon used a plate and 4 screws. In outpatient rehab they had me "ambulating" with taped padded boards to lock my knees and using parallel bars.
                Two of the screws broke, and there was virtually no bone re-growth (actually on; the other pulled out). The orthopedist got very frustrated when I refused surgery and chose electro-magnetic stimulator.
                I went ahead and next visit to him he took an 'Xray in his office. It was nice when he held the film up to his overhead light and exclaimed: "look at all that callus! I have some associates who need to see this"
                This was the result of getting a second opinion from another orthopedist who was the object of our search for someone qualified with spinal injuries and well reviewed.
                NEVER TRUST A DR ON BIG DECISIONS! ALWAYS seek a second or third opinion, and do your homework finding them. Believe it or not, you're fishing in a toxic pool sometimes.

                Also, I'd think you would be much more prone to butt wounds; the weight of most of your legs, a significant amount of your total weight, hangs off the cushion like a couterbalanced scale, lifting your butt, and expressing that weight on your upper thighs.
                And I can't imagine keeping my head up with no bottom; I think it would be sketchy at least, although there would be a lot of weight gone.
                69yo male T12 complete since 1995
                NW NJ

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                  #9
                  I would definitely recommend getting a second opinion. Six weeks of non-weight bearing is probably not long enough to see any healing. If at all possible, try to find someone who has experience with people who have had a spinal cord injury. The suggestion of using someone who treats osteoporosis is also a good one.

                  Gather the facts about your fracture and also alternative treatments before making any decision as major as this one. This will impact your transfers and independence so make sure that you are as comfortable with your decision as you can be.

                  ckf
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                    #10
                    Update on tibial fracture

                    Jun 6th '18 (6 weeks later): Thanks to my daughters and a PA here at the rehab, I've gotten new x-rays and a consultation with the Chief of orthopedic trauma surgery at BWH in Boston. The fracture is still complete but apparently more stable.

                    Contrary to the advice given by his Fellow, the Chief agrees that given my particular situation, amputation would do me more harm than good. The fracture is right above the femoral condyles & I'm supposed to flex the leg on the break rather than on the knee itself. We've tried this and it seems to work, the job right now is to reestablish safe transfers between bed and wheelchair. It's going to be an interesting process.

                    I've been very lucky to work with this crew of surgeons. They know everything about leg trauma in ABs but nothing about handling it in paras, and were very appreciative of my helping them to educate themselves about that. The process is collaborative for once and even if I can't manage the rehabilitation, all concerned are learning things.

                    My review of posts relating to leg trauma in CareCure was invaluable in getting me up to speed about talking to clinicians about leg trauma and SCI. My thanks to all those posters! - fw

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                      #11
                      The whole "legs serve a pivot point for balance" and are absolutely necessary for safe and productive transfers argument is so overused and spoken as truth in the SCI community, I find it ridiculous. Of course, you hear that by individuals with legs, because they don't know any different. Positioning of your hands and upper body strength is far more important. You have greater transfer range and distance abilities without the legs. All my transfers have been cleaner and safer, and with less episodes of shearing.

                      Both my legs were amputated AK over 2 years ago now, was the best decision I made post injury. If you're adept with upper body coordination, your transfers will become easier. It'll take a week or two to get used to weight distribution, but everything about ridding yourself that dead, lifeless weight is a benefit.

                      Less cumbersome transfers, faster transfers, quicker movement when out of your chair, no repositioning of your legs, easier to get closer to objects and roll straight up to things, etc, etc, etc Would do more harm then good? Hardly.

                      The only 'negative' is losing a lap to balance objects on. I just have to get more creative now with how I carry things.

                      I can see it being difficult to wrap your head around after 55 years post. I waited 4 and wish it was done right away. If you find the few other SCI here who have had their legs cut off, every single one says the same thing I have.
                      Last edited by paraparajumper; 7 Jun 2018, 11:54 AM.

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                        #12
                        Originally posted by paraparajumper View Post
                        The whole "legs serve a pivot point for balance" and are absolutely necessary for safe and productive transfers argument is so overused and spoken as truth in the SCI community, I find it ridiculous. Of course, you hear that by individuals with legs, because they don't know any different. Positioning of your hands and upper body strength is far more important. You have greater transfer range and distance abilities without the legs. All my transfers have been cleaner and safer, and with less episodes of shearing.

                        Both my legs were amputated AK over 2 years ago now, was the best decision I made post injury. If you're adept with upper body coordination, your transfers will become easier. It'll take a week or two to get used to weight distribution, but everything about ridding yourself that dead, lifeless weight is a benefit.

                        Less cumbersome transfers, faster transfers, quicker movement when out of your chair, no repositioning of your legs, easier to get closer to objects and roll straight up to things, etc, etc, etc Would do more harm then good? Hardly.

                        The only 'negative' is losing a lap to balance objects on. I just have to get more creative now with how I carry things.

                        I can see it being difficult to wrap your head around after 55 years post. I waited 4 and wish it was done right away. If you find the few other SCI here who have had their legs cut off, every single one says the same thing I have.
                        What about your center of gravity on a wheelchair? I guess my legs probably don't weigh all that much, but I'm already annoyed by how far back my wheels have to be to keep me from wheelieing every time I push forward, if I chopped off 20 or 30 pounds of lower leg I'm sure I'd have to do something to move the back of the chair even further forward, because my ZRA already has the COG set forward as far as possible and is still annoyingly tippy.

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                          #13
                          But now that I think about it, it would definitely make climbing stairs easier and probably make for quicker transfers in and out of the car because I could shave off the three steps of adjusting my legs for the transfer each way.

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                            #14
                            Originally posted by firewheels View Post
                            And since the left leg is apparently of "no use", the surgeon is of a mind to amputate that one also.
                            Do you know one definition of a PhD? Someone who knows more and more about less and less. Doctors often have blinders on and need to widen their scope of consider. I would explain to him that it is of use. It provides balance, off loads pressure, and enables a base for transfers. Then I would find a different doctor who doesn't need to be told this. Because you have to wonder what else this doctor doesn't get.

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                              #15
                              Originally posted by funklab View Post
                              But now that I think about it, it would definitely make climbing stairs easier and probably make for quicker transfers in and out of the car because I could shave off the three steps of adjusting my legs for the transfer each way.
                              Yup. Getting around on the bed or the floor or any surface is so much easier. Every movement you have to make requires repositioning of your legs. Without them, it's so much faster.

                              I think I lost 18lbs when my legs were cut off. Mine were completely atrophic, so if you have a lot of muscle they may weigh a bit more, but I doubt they will be 30lbs.

                              My COG is 1.5"which is honestly not too far back. What you can also do, which I used to use but don't actually use anymore, is have a local welder fabricate a foot rest plate as heavy as you need it. I came up with the following design:









                              You can drill two holes in your footrest which correspond with the two pegs in the plate. This can serve as a counterbalance if you want to keep your COG close to 0 and you can quickly remove it and place it on the footrest when you're transferring in and out of your car or whatever.

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