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    Voluntary amputation

    My husband is 39 years post injury, c-5/6. He is considering having his feet and/or legs amputated due to quality of life issues. He has pressure sores on his feet, new never before sore on tailbone etc. I would deeply appreciated any input regarding this. This is a serious question, not idle curiousity. I'm his only caregiver, 56 and he is 60.
    Last edited by marie2; 12 Aug 2010, 4:22 PM. Reason: Forgot important info.
    "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

    #2
    Marie--there is wonderful work being done in wound care and limb-salvage clinics for patients facing the same issues your husband is. A product known as Microcyn is being used and has saved more lives and limbs than can be counted. You're in Washington, right? There is a wound care clinic in Lakeview Oregon that specializes in this. It is run by Dr. Cheryl Bongiovanni.

    You can contact Dan McFadden at dmcfadden@oculusis.com and he can hook you up with Dr. B, hopefully, or he may know of others closer to your area. Let Dan know you are facing an emergency.

    Good luck!

    Susanne Lewis
    I'm back on Facebook again--up and running!

    http://www.facebook.com/profile.php?...00000532232573

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      #3
      Thank you for the info. I will look into it. Ken said he read about it recently. Maybe the va sci clinic can help.
      "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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        #4
        I have no advice for you, but want you to know I am sorry that it has even come to thinking about this. My hubby has MS and he has often wondered about having them amputated and have artificial legs made and then maybe he could walk again. Not quite the same I know but, just wanted to let you know I'm sorry.

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          #5
          It's the whole "everything is harder to do now" and my age coupled with my herniated discs. The idea that more mobility and continued independence might be the exchange is awfully heady. We would never have considered this in the past. He has had his share of bad bedsores so it's more like he has reached a tipping point and is thinking about it seriously. My way of thinking about things is to collect information As for MS, disability doesn't discriminate does it? I'm sorry to hear that you've faced the same dilemna. Thank you for sharing, not many people get it.
          "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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            #6
            Marie--Microcyn is not on formulary with Veteran's Adminstration medical clinics yet. It is currently up for clearance to be reimbursed by Medicare/Medicaid, and then the Veteran's Administration will follow suit. This is going to take awhile. You could be treating his sores with Microcyn right away. You just need some professional guidance.

            Death rates for elderly patients undergoing lower limb amputation are uncomfortably high. Do some research on that.
            I'm back on Facebook again--up and running!

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              #7
              Someone here at CC had a double leg amputation, if I remember right, a year or more ago. Can't remember who it was, but maybe he'll see this thread, or someone knows who I'm talking about. He is glad he did it.
              Originally posted by marie2 View Post
              It's the whole "everything is harder to do now" and my age coupled with my herniated discs. The idea that more mobility and continued independence might be the exchange is awfully heady. We would never have considered this in the past. He has had his share of bad bedsores so it's more like he has reached a tipping point and is thinking about it seriously. My way of thinking about things is to collect information As for MS, disability doesn't discriminate does it? I'm sorry to hear that you've faced the same dilemna. Thank you for sharing, not many people get it.
              Please donate a dollar a day at http://justadollarplease.org.
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                #8
                I had a friend of about 50 years who was a para. He had circulation problems in his legs and had them amputated. He never left the hospital and died from blood clots. He was 65 years old.

                Good luck.
                Millard
                ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne

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                  #9
                  I had one leg amputated last month. So far so good but to early to predict

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                    #10
                    Originally posted by lisarolls View Post
                    I had one leg amputated last month. So far so good but to early to predict
                    Blood issues?
                    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

                    Fenexy: Proyecto Volver a Caminar

                    http://www.fenexy.org (soon in english too)

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                      #11
                      Fought sores for long time. Finally got life threatening infection

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                        #12
                        It seems to me that the Seattle VA sci center could be doing a better job for your husband. It should not be all your responsibility to care for him even though you are doing your best.

                        Perhaps KLD (one of the sci nurses here on the site) could help advocate for him since she works for the VA at one of the California sci centers.
                        Anything worth doing, is worth doing to excess

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                          #13
                          Lisarolls, I hope all goes well. Ken is fairly adamant citing diabetics and others who have had to do it and that they are fine. I have concerns about dysreflexia, clots etc. He lost weight on purpose last year to control spasms (seemed to help) but lost padding as well. I wish...he thinks he won't have pressure sores if he wears a prosthesis (sp) with shoes so he looks "regular". I'm not so sure. I did do a search for posts and found a person who did it and apparently is doing well mobility wise.
                          "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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                            #14
                            Sorry, I didnt see the second page and mobile posting is weird . The VA is great he is just tired of dealing with his feet, hasn't talked to them yet and is afraid of being stuck in the hospital. It's hard enough to get him to have his annual eval partly because in every other way he is very healthy. We could get an attendent, we have in the past and just don't want to go there again. We are putting that off as long as we can which is part of the convoluted thinking we are having. I sound like one of those people who always have a reason why some peice of advice doesn't work :/ I just want to learn from others' personal experiences.
                            "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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                              #15
                              Originally posted by marie2 View Post
                              My husband is 39 years post injury, c-5/6. He is considering having his feet and/or legs amputated due to quality of life issues. He has pressure sores on his feet, new never before sore on tailbone etc. I would deeply appreciated any input regarding this. This is a serious question, not idle curiousity. I'm his only caregiver, 56 and he is 60.

                              Marie2,

                              I see two major issues in your question. The first is if your husband is getting the medical support for the pressure sores. (you might look at some older threads, that address medial care of sores that have come up this past month). The skin breakdown should be able to be treated and not return.

                              The other issue is one of what might/should be done to ease his care. In that he is considering amputation. (I wish I knew if he was out of bed, or confined to bed). The idea of amputation is extreme, and I am not sure this needs to be considered yet. If the breakdowns do not heal after major work to correct, then he might want to consider.

                              I am a para, and up and around. I have major issues with ROM in knees and hips. The idea of a below the knee amputation has crossed my mind, but I am not yet ready to go there as long as I can get out of bed and function.

                              I think you should look into an attendent to help push back the tipping point. Also Home Health Care for the breakdowns.

                              Good luck to you both.

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