Friday, April 2, 2010

Elective Amputation

My amputation was considered "elective" because I did not lose my foot in my accident as a child or through a disease like diabetes. I had an arthritic joint as well as other severe foot problems; I could have lived on pain medication for the rest of my life, living with the side affects, health complications, and loss of life quality in the process. Eventually the pain would have intensified - as it was steadily climbing - and I have no doubt I could have lost my job simply because you can't work in a drug-induced haze, at least I can't. Living on pain pills is not the answer.

In definition only my amputation was elective. For me, I thought it necessary to restore my life as I wanted to live it: my free choice, not an elected official or bureaucrat or medical screener deciding for me. I now live without the constant strum of pain, the limping, the not wanting to do anything requiring much walking, and the cost of medications. Also my body's organs are not dealing with various drugs designed to make me comfortably numb.

As I've written in earlier posts, amputation was not something I wanted to do, but given the choices, I knew I had to do it in order to get my life back. It was hard bargaining, and nothing I wish for anyone, but I had a choice, whereas someone in an accident may wake up missing a limb that they had only minutes or hours before. The mental trauma may be worse than the physical.

I have talked to several people looking into elective amputation. After they have researched the subject and talked to others like me, they know what they want: it is an end to their pain and suffering and to get their lives back. They don't want to shuffle around, be forced to sleep on the couch with the TV on until they pass out from exhaustion, or dread walking the dog around the block.

Time and time again I have found those looking at elective amputation are well informed, and mentally have come to terms with losing a limb to regain their lives. It is not an easy thing to do, far from it, but there is often another battle this person faces, and in many ways far more personal.

Enter the prospective amputee's family and friends. After giving this much thought, I have come to the conclusion that in most cases, these people react as a trauma amputee would. This was not something they have been giving any thought to and it is a shock to their systems. They do not have the same knowledge or perspective as the one looking to get their life back. They take it personally, as if they are losing their own limb, and often react in shock, horror, and disbelief that anyone would voluntarily choose such a thing.

Now when the person considering the operation needs the most support, they are often made to feel guilty for wanting to take this courageous step. Personally, I was extraordinarily fortunate in that I received very little negative feedback, and only one person tried to talk me out of it. I suppose even that one person was not so discouraging as I took a good look inside to think about anything I had not considered, given the permanent aspect of this operation.

So to family and friends of the person electing amputation over a broken life, consider a couple of things. If you've ever had a root canal, think about the pain and suffering you were in until the time you had the tooth removed (not unlike an amputation) and then replaced with an artificial one. Your friend wants to end the daily pain and suffering they are going through, not only from a limb but from the loss of love of life they have so enjoyed. If limb loss gives them their lives back...who are you to deny them this joy?

Secondly, if you are truly interested in helping and understanding your friend, arm yourself with knowledge. It has never been a better time for amputees and particularly active ones with modern prosthetics than now. This blog has tried to be an honest diary of my own journey, but read about others, such as Kelly Luckett, Jason Gunter, Dr. Tom White, Amy Palmiero-Winters, Sarah Reinertsen, Amy Dodson, and many, many others. Some elected to have a limb removed, others lost their limbs through trauma, disease, or birth defect. If you really want to see what it is all about, volunteer at Gettting2Tri Foundation (G2T) or Challenged Athletes Foundation (CAF). You will find the answer there.

I am always happy to talk to anyone going down this road and meeting with family members if Jennifer and I are able. I think seeing and hearing from an amputee goes a long way to easing the minds of the prospective amputee's friends and families. Just remember someone with limb loss does not become an alien being other than they may become a happier person you haven't seen for a long time because they have been in pain.

From time to time I think of how my life would be today without limb loss. I cannot think in any substantial way that things would have been better. I would wake up and within a couple of minutes on my feet the pain would intensify until I would start limping.  Limp to the car. Limp to my desk. Oh please don't call me. Oh you did...limp to fix a printer problem. Limp to lunch. Limp home. No, I'd rather not walk the dog. Take pain med. Go to sleep. Repeat. Forever. Never run again. Never hike. Never live.

Never.   Never.   Never.

I have been working on this post on and off for a while and will likely update it as I move through this experience. I hope it helps others understand a little more about this serious decision. For family and friends of your hurting loved one, please try to understand what they are going through. Your support is needed, no one is asking anything else from you.

If your loved one can do this, then you can too.

Let them live.

(Note: I have a more recent posts about elective amputation. Part II is here and Part III is here.)

13 comments:

  1. Great post, Richard. The sharing of this kind of knowledge with people who are looking at the elective option is invaluable, and your humility and generosity in offering assistance to others and their close friends and families tells us all we need to know about you. The pressure of others in any decision making process can sway opinion, but it is the individual, in every case and scenario, who has to look at themselves and live with their decision every day of their lives. Knowledge of personal experience is so powerful here.

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  2. Hi Ian,

    I am hoping anyone considering amputation will be able to point to this post for others to read who many not understand this decision. I have talked to people in this exact dilemma and it is hard to have to convince someone else that they want to go through this procedure. You are right, ultimately it is up to the individual. The decision is not easy on many levels.

    I think as long minds are open to facts then the best decision can be reached.

    - Richard

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  3. Excellent post! I hope that when people google ANYTHING about amputation surgery your blog pops up first. If I had read this post way back in July I would have had my surgery right then and there! Except I would much rather lose another limb than go through a root canal. Keep up the great work, you are an inspiration to us all.

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  4. "I would much rather lose another limb than go through a root canal."

    Now that is FUNNY but true! As I've mentioned before, surgery comes with it's own risks, but I've known people who have been through 16 - 26 surgeries in an attempt to fix a wrecked paw. So how is that any "better?"

    You have a terrific attitude and will do great, lots to learn over this first year.

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  5. I am in the process of making the decision to have a below the knee amputation due to partial paralysis on my right foot. I have had several very painful surgeries (tendon splitting, transfers, cutting of flexor tendons in my toes as well as my achilles tendon snapping and a repair). It's been many years since my last operation and I have two little boys. My neck and back on my left side are always aching and my foot is just dead weight. Cold during the winter and swollen during the summer. I limp and it is getting worse. I am active and would do anything to run or hike or even ride a bike with my boys. I am 40 years old and I fear my future is going to only get worse. Unfortunately I am being met with resistance from family, but mostly have a good support system and great doctors. I have been researching this option for over a year now and I wish I had done this sooner. My fear is that I have been walking with a limp for so long and cannot remember how it even feels to run. What if I go through this and God forbid something horrible goes wrong. I need to hear inspiring stories like yours. Thanks for the post! Would love to know how you are doing now.

    Lisa

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  6. Hi Lisa,

    You probably found this post via a search engine. If you look on the right sidebar of my blog you will see the archives and can read as much or little of my entire journey from prior to the operation until the most recent posts, which is about my running the Charleston Marathon. So in a word, I am doing great.

    Feel free to email me to discuss anything on the topic. This is a very tough decision and it still seems strange to me that I lost my foot. But I do not regret it in the least.

    At least as important as your surgeon will be your prosthetist, for that are NOT all equal and you will have a lifetime relationship with them.

    Best of luck to you.

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  7. Thank you for posting this.

    I am seriously thinking about a below the knee amputation on my left leg. I have had six foot/ankle surgeries including a subtalar and tibial-talar-calcaneal fusions over the past 13 years. As a result of the TTC fusion, my fibula is too short for a total ankle re replacement. My last surgery was in May 2013 where I had a bunionectomy, fifth digit repair, and a painful screw from the TTC fusion removed that was gauging my twice-repaired posterior tibial tendon. I was then broadsided by a person who ran a red light in July, which totaled my car. I have been dealing with daily swelling and pain since 16 days after the accident. Luckily, my family is supportive thus far as they have watched me suffer all of these years. I plan to discuss this option with my doctor at my next appointment in two weeks.

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    1. Best of luck to you Cassandra. It seems so awful for surgeons to operate and operate and leave their patients in no better and more often in worse condition. Life is far better imo with a prosthesis than a painful, irreparable foot that limits life in every way, every day. Please let me know if I can help answer any questions. As an fyi, I just ran 18 miles this morning. No surgery on my old foot could have fixed it to do this.

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  8. This is really interesting for me to read. I've been having constant pain in both feet for five months - I try to explain how bad it is to family and friends, but it is hard for them to understand how life impacting it is. My doctors keep saying it is one thing, then another, and then "here you go, here's some pain medication" - that doesn't work...sometimes I use cold packs, sometimes I use warm packs to try and ease the pain, but mostly nothing works. I feel sick at the thought that this pain is going to be with me for life and told my mother and husband that I would rather have my legs below my knees removed. They thought I was joking - I'm not. I won't do this yet, as there is still some avenues I can look at to see if there is something that can be treated, but I will do it if all they can offer is pain management. I want to live...!! Thank you so much for this post Richard.

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  9. Kate, it is good to research all options available to you. Whether you need to go down this road or not, it is good to be fully aware of the choices available to you. I know several women currently considering this procedure, and all are talking to those who have had the operation.

    Best of luck to you, and if you have any question don't hesitate to ask.

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  10. Thanks for this info. I have neurofibromaosis type 1 and have a large growth on the bottom of my right foot. It was very painful to walk on. I went to a orthopedic specialist and together with a plastic surgeon the removed the growth and using my latissmus muscle rebuilt the botom of my foot. Well this turned out horribly. Its been three years since surgery and I am in more pain now than before the surgery. I can no longer work and I have to keep my foot propped up most of the time because it swells up very quickly. I also wear a compression stocking all of the time. I am now seeing a doctor that charges me very little because I have no job and no insurance. He has me on pain meds but has suggested the only way to help the pain in thelong run is amputation. Its either that or a life of pain meds that don't help much.

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  11. Becky, sorry you are having a rough time with this. I believe your doctor is right based on what you have written. Is there any work-from-home jobs you might be able to do to obtain insurance? I am thinking with a prosthesis and no pain you'd then be in a better place to return to the workplace.

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