Sunday, June 19, 2011

Elective Amputation Part III - The Physician and Saving Lives

I have written a couple of blog posts about elective amputation. The first is here and the follow-up is here. This will be the third in the series, and one that I find disheartening and disturbing to write. It concerns physicians who only see amputation as dismal failure. Additionally, if it must be undertaken, then as much limb as possible must be saved, even if it means taking half a foot and rendering the patient barely able to ambulate, much less enjoy life again. Let me say here and now that partial foot amputation is pure butchery, simple as that.

I want to mention there are physicians who know amputation is often the best choice for their patient. For a person who first faces limb loss this can be a traumatic experience and the word "amputation" tough to hear. Since they have not had time to process the situation or arm themselves with knowledge about the procedure, they often make a choice they may later regret. I recall an article about Dr. Tom White, a national class runner and physician himself, when faced amputation after an accident exclaimed: "Doc, I'm a runner!...Save my foot. Please save my foot!"

Dr. White would go through many years of pain and suffering to come to the conclusion that amputation was the best possible outcome for him. He simply did not know, or was able to understand, that loss of limb does not mean loss of life, it preserves and can enhance life far beyond anything one can imagine.

My surgeon, Dr. Blake Ohlson, never made me feel like the doofus I can be on occasion. The fact that I thoroughly researched the history of the Ertl procedure, knew that with a prosthetic foot I could run again, and, I think, my outlook was positive with an intense desire for success, made us know this needed to be done. I did not want it, but not having it was a far worse alternative.

I know my decision has helped others struggling with this choice - for some it may seem like a no-win situation. Far from it, this is NOT true and there are many stories of miraculous success that stand as solid proof. The typical story is not that a person regrets having the amputation, only that they regret not having it sooner.

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Kelly Luckett, multiple Boston finisher, ultramarathoner, mentor
For once in my life I feel I have made a real difference not only in my own life but in others. Although I knew failure - or worse - could befall me, I don't think I ever dwelled on the negative. There is no place to go but down doing that, and I found myself pleasantly amazed how a positive outlook bred more positive results. No matter how bad things may get, gazing into the darkness holds no hope of coming into the light.

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Scott Rigsby undergoing reconstructive foot surgery
Scott Rigsby lost one foot at the time of his accident, then chose elective amputation when a reconstructed foot proved to be nothing but a painful remainder of the accident and loss of his athletic ability. Many surgeries and recoveries racked with infections had no end in sight; he then chose what some surgeons would consider unthinkable, to have the foot removed.

Scott then did the unthinkable, becoming the first bilateral amputee finisher of the Hawaiian Ironman competition.


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The driving force behind this post are people who have contacted me through this blog who are researching and deciding on elective amputation. In most cases these folks have far worse injuries than mine; they are in excruciating pain and on high levels of painkillers/narcotics just to get through the day. Some are unable to work or enjoy any semblance of a normal life and personal relationships are under pressure. Several have had many surgeries only to face more and more that will not ease their pain and possibly/likely increase their discomfort. Every surgery is another chance for complications to set in from infections to more tragic results. I know suicide has an appeal to some, to end the pain and suffering at the hands of...yes, the one who has sworn an oath to do no harm.

The absolute tragedy and inexplicable behavior by some - not all - physicians is telling a patient that they are crazy to want amputation, in fact they need to have a psychological evaluation for suggesting such a thing. The patient should want 10, 15, 25 or more surgeries to "fix" the condition that will never be corrected, never mind each surgery brings risks as well as trauma to the body and spirit. Ask these surgeons if they can "fix" the patient and you will get sidesteps and indeterminate answers at best. They cannot promise on any level that anything approaching normal mobility will be possible when dealing with crushed feet, missing heels, mangled limbs.

Certainly an able-bodied person without any injury who wants amputation as some sick form of mutilation needs to be evaluated and possibly committed, but hopeful anyone with an ounce of common sense can differentiate this from a person in an aircraft crash and a damaged leg, or suffering from a nerve condition where they feel nothing so they unintentionally destroy their legs as their feet flop about.

The patient is to be satisfied to live a life in wheelchair or scooter, on crutches or a walker, in unwieldy braces or orthoses, all to save a useless and painful limb because the physician believes this is the best possible outcome. It is the doctor's implicit belief that being on high level of pain medication is the best protocol, the side affects and addiction are acceptable results, and that loss of a limb is the same as a lost life.

Placing the patient in a brace or orthosis will cause the body to compensate, putting inbalances in place that can and will cause additional problems to the "good side" in a unilateral patient. As the "bad side" atrophies it may take years to recover from the losses. Then even if amputation were to occur the patient might have problems caused by the efforts to stave it off in the interest of protocol. Note I am not talking about minor injuries, but patients who have had significant trauma or other condition that has caused them to seek amputation as relief. My initial accident was not a cause for amputation at the time, it was the effect of arthritis destroying my joint that ultimately lead to my decision.

As living, breathing truth, I am here to tell you it is wrong and borders on incompetence for a physician to insinuate that someone with a damaged limb is crazy to want to discuss and have amputation. A loss limb is not a loss of life, far from it. Done under the skilled hands of a talented surgeon, an amputated limb is often the best possible outcome, for it ends the life racked by pain. Narcotics and their destructive properties to organs are terminated. Finally, with a modern prosthesis, there is little to nothing a person cannot do. Mow the lawn again? Check? Play in an orchestra? Check. Go snowing boarding or skiing? Yep! Golf, scuba dive, drive the car? Check, check, and check.

Run a marathon? Become an Ironman? Climb Mt. Everest? All true.

Cadie Jessup (center) in mountain climbing training
So who is the madman, the physician who would sentence - and I mean that literally - their patient to a life of surgeries, to pain, to narcotics, to lack of mobility? Or is it the patient who wants an end to this madness and to have their lives back, to live again? Who indeed.

Physician, check your premises. If you are unable to help your patient, refer them to someone who can. It may be ironic, but losing a limb may be gaining a life. This is particularly true for anyone who wants to be active again, who has dreams and goals as a human being, who knows every life is sacred and none are to be flippantly tossed aside into the 'good enough' trash heap of the uncaring. It is not my intention to be contentious here, but having seen and heard from people in constant pain because their doctors refuse to help them causes me to bring this into the open.

There is music to be played, races to be run, mountains to be scaled, life to be loved.

And on this Father's Day, catch to be played with a child someday.

Let them live.

The unstoppable Jason Gunter

6 comments:

  1. This was wonderful to read. My husband is about to have an elected BKA July 11,2012!

    The struggles my husband has experienced to be given "permission" from surgeons, therapists, friends, family, and most of all insurance companies has been a 10+ year battle with chronic pain (8/10scale- he kicks in his sleep he is in so much pain) and progressive opiate addiction. We are currently seperated due to addiction issues, and have been living seperate for 5months while he does outpatient treatment.

    Annually he has detoxed off his pain meds (to lower tolerance, or to try to be sober and tolerate pain)....each detox episode entailed delusions of sawing off his own leg to escape the cycle.

    At 35 years old his choice is the same as it was at 25. Only now he is being heard! Over this decade, He has had to proove to so may doubtful healthcare providers. My husband feels theirr discouragement of an amputation is a reflection of their own fears of loss or self as well as lack of empathy. Providers have quadruple checked my husbands' certainty of the accountability he must/will and is going to take with prosthesis/stump care/post op care. He recently told his surgeon and prosthesis man, "Whatever is involved it is not as complicated as being a slave to pain and addiction..."


    I want to thank the care team at my husbands Outpatient treatment facility for seeing my husband for who he is... a man in need of choices, to be heard, validated, and now helped.

    As his wife, who is supportive of a full recovery, I am grateful for my husbands enthusiasm. For the first time in 3 years, (since he became unable to perform job duties from pain in congenital ankle), his self esteem is soaring! My husband cant wait to proove to some people (doctors, old employers etc.) wrong and become a success storie. He also looks forward to a life of sobriety after acute pain has subsided. We have a detox plan at an inpatient facility. It will be a dynamic year for us, but for once the cycle is breaking!!!! We look forward to biking, walking, hiking, and dancing ALL night! He looks forward to going back to work and 'running circles' around the other guys:)~ Courtney Maxwell, Portland Ore. 6/7/12

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  2. Best of luck to you and your husband as you start a very new chapter in your lives. Your story is similar to my friend Jeff Nolan's. Jeff went from that place to zeroing in on doing an Ironman. His old life of constant pain his given way to a one of hope's blessings.

    My email address is under the "About Me" heading on the sidebar if either of you need to contact me. Don't hesitate to ask any questions you may have that you think I can help with.

    I'm pulling for both of you to come through this fire into life again. As my wife likes to remind me: Eye on the prize.

    - Richard

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  3. I have looked at this blog SO much in the past year or so. I am 15 years old and have a BIG decision to make. I was born missing my left leg above the knee and with fibular hemmemelia in my right leg. Ever since I was nine my right leg has gave me constant pain. We have tried surgeries and multiple braces. None of it helped the pain. I am actually going to an Ertle doctor tomorrow to talk about amputation being an option! I have been thinking about this "elective" amputation for about 2 years now. I have decided, just as you did, that it will help me gain my life back. I also think it will be easier for me since I have had a prosthesis on my left leg since I was 10 months old. I used to cheer and play sports but I have had to stop doing what I love because the pain is so bad. I know below the knee amputation is for me and I am thankful I read your blog to help with my decision!!

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  4. Micaela,

    You are right, it is a big decision, one I wish you did not have to make. No one can really understand it better than you, yet at your age I know it may be even tougher.

    If you proceed please be sure to be safe during your recovery, be focused on your PT and keep your positive attitude. It will take time, but here you have an advantage because of your youth you should heal more quickly.

    Sometimes it will be hard but know it does get better. Recognize each small improvement actually as a big accomplishment. Walking for 5 minutes and then 10 is a 100% improvement. Keep this in mind and celebrate these milestones, they happen all the time.

    I wish you the best of luck and hope you let me know what you finally decide and how you are doing. You are very brave and I know anyone around you will see one extraordinary young person.

    - Richard

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  5. Richard, I was led here through a google search, and am doing some soul-searching as well about elective amputation (although I hate the term!) I am soon to have my 12th surgery (ankle replacement), and will be at the two-year mark of my injury date Nov. 30th. The limb-preservation rollercoaster is a depressing one, and yes...it is very disheartening that surgeons do not take the "whole person" into account with their work. They see something to "fix". You give a lot of good examples of ways in which our lives are affected by continuous arduous surgeries, recoveries, therapies, etc., and this gig affects an entire family!

    I actually blogged about my situation recently: http://www.acrazykindoffaith.com/2013/06/reality-check-update-on-my-gimpy-little.html

    Trying to learn from folks who have "been there". Not a decision to take lightly, but the words I hear from so many (including yourself) is, "I wish I would have done it sooner."

    Thanks for sharing your journey!

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    Replies
    1. Good luck with your decisions, Chris, I know it is a difficult thing to think about. Please let me know if you have any questions beyond what you have read here. I will check out your blog in more detail, but know you are not alone and many others have gone down this path.

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