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Elective Amputation: Navigating the Emotions and Making the Decision

Posted by Bryan Potok, CPO on

It's part of the conversation now—elective amputation surgery. And you’ve been thinking about it for some time or you're in the process of doing your homework. Taking the next step and deciding to go through with an amputation is undoubtedly an emotional one. In this article, we can only begin to skim the surface on elective amputation.

Elective amputation is an emotional and difficult decision.

The decision to amputate can either be medically necessary or matter of improved function and quality of life. This is a tough emotional decision, and considering the probability that you either are in discomfort or under heavy medication from infection makes it all the more critical.

Your decision to amputate may boil down to either medical necessity (i.e., to prevent the spread of an infection) or improving quality of life. Patients who are confronted with the former often— along with their physicians—choose to amputate immediately. Their decision—driven by the need to protect the rest of the body from the infection—is usually swift. However, for those whom amputation is a matter of improving quality of life, the decision can drag on for years.  

Deciding whether to save or amputate a limb comes with a flood of emotions and questions, and there is no doubt that some will be more challenging than others. 

If this is you, you can start your process by talking to your prosthetist. Ask him or her to present the entire picture to you, such as what level of functionality can you expect if you choose to save your limb, what level of pain can you expect after the surgery if you decide to amputate, and what your "new normal" will look like if you choose to save your limb vs. post-amputation. 

You can also call Amputee Coalition and ask to speak to a Peer Visitor. They will then match you with someone whose background and lifestyle closely matches yours. This way, you can talk to someone who has gone through almost the same experiences as you.

Not the Same for Everyone

However, it’s also important to consider how you perceive “normal” can be different from how another person defines it. So, listen to your prosthetist and peer visitor and spend as much time in research as you want. Then collate all this information and try to see which situation is better for you. 

Also, take into account the fact that the grieving process can start even before you decide to amputate your limb. This can make the decision process difficult. However, the great thing about talking to your prosthetist or a peer visitor is that it sets you up for realistic expectations. When you have an idea of what to expect and what your options are post-amputation, the emotional part of the healing process will be a bit easier. In reality, the emotional healing and acceptance process can take upwards of 5 years on average.

Lastly, focus on the long-term benefits—not the short-term—of choosing to amputate vs. saving a limb. The path towards amputation is not going to be easy, but it’s undoubtedly a well-traveled path. So, you will never be alone on your journey to adapt to your new lifestyle. Many amputees quickly adapt to their new normal. Many of them also find that they can do a lot of things they did and enjoyed before amputation, such as working out and participating in sports.  

Did you have the option to elect to amputate? What was your process like? Please share your experience with us in the comments section below. 
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  • I am due to have amputation on 27th December 2019, I have cerebral palsy and calcified tendonitis in my right ankle, I am in pain 24/7 and no painkillers work for me. My surgeon agreed to amputation as he wouldn’t be able to take all the calcification away, so my foot would always be in an awkward position and I’d always be in pain. I’ve always lead an active life, and due to this I now can’t walk without crutches, and even then not very far.

    Kerry Chapman on

  • I had a traction injury to my right arm that left my hand severely contractured since 2013. I had had tendon release surgery, with absolutely sod all to help! I got a bypass prosthesis, a bivalve socket that allows my contracted hand to slide in and suspends from my styloids, in 2016; it’s a monster that is 6 inches longer than my sound side and the limits for the harness make it harder than a standard transradial prosthesis, plus the weight is a literal pain for my damaged acromioclavicular joint. Then I have constant skin breakdowns, sores, and a wrist that’s so weak I can’t control it at all! I asked for an elective amputation (aka “flexion recovery” below elbow) surgery, but the local hand surgeon not only refused, he declared me mentally incompetent and refused to work with me on anything! It gets worse: when I asked my regular doctor about it, she tried referrals, but no one who takes Meridian even wants to touch my case, not even to hear me! I live in Illinois, so I’m asking if anyone has run into THAT kind of situation!

    April R Thompson on

  • RBK , Jan 2017. I was in constant pain from multiple tendon injuries around ankle and foot, repeated fractures of the 3 lateral metatarsals (due to ostopenia in mid-foot), instability/lack of control of my ankle, and grade 4 (bone-on-bone) osteoarthritis. I was told I needed at least three limb salvage procedures to “save” my foot, assuming that each set of procedures went as planned/hoped. Each came with a year of healing/rehab to return to full weight bearing, would leave me with screws and plates, scar tissue from several incisions, and an elevated risk of infection for the rest of my life. At best, this was all to stabilize my foot and ankle so I could keep it. No hope of restoring any active function, no hope of reducing the moderate to severe pain I was already living with. I would most likely be dependent on prescription pain medications for the rest of my life.
    Dark times… my active life was over. I tried to learn everything I could about the procedures, complications, likely outcomes, and along the way discovered many who’d had these procedures and were suffering from bad outcomes and additional procedures. I also met some amputees who’d been down this path and it ended up at amputation. They were more active with a prosthesis than I was by then, or than I would ever be again. I struggled with this for months, and finally realized that amputation wasn’t about loss, but about the opportunity to get back at least some of my once active life. I chose amputation, and that shot at getting my active life back.
    It took 6 months before I cold be fitted, but I haven’t looked back since. I’m active again, pain-free, and back to walking, biking, hiking. I got a running blade this spring through a CAF grant, and I’m working on getting my miles back up and my times back down. No Regrets, Life is good and getting better.

    Glenn Meurer on

  • Paul Blaha: As an above knee amputee since 2011, I think your message should be shared with every amputee who hasn;t yet found a comfortable socket!!!

    Susan Cotten on

  • I had an old burn wound on my left malleolous that opened and was treated with dressings to which I developed an allergy and caused another wound on my heal. Once osteomyelitis was confirmed, I knew a below the knee amputation was my best option and the only way I would avoid months and years of pain, antibiotics, and more infections. My amputation via “fish mouth” incision was on 26 November 2018. I was home two days later, took a month long overseas holiday
    after Christmas, and in a prosthetic by the end of February.

    The only phantom pain I think I have had is faintly “feeling” the same pain I had before the surgery.

    Paul Stempel on

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