Elective Amputation

May 5, 2014 10:20 PM

In pain and forced to use a wheelchair, a young woman opts to amputate her clubfeet. "New prosthetics have made active life possible for many with injuries and congenital defects​." [Via]
posted by homunculus (35 comments total)

Hopefully they have words for 'malpractice suit' in Gaelic, because there's no excuse for screwing up such a simple condition as clubfoot so badly that an amputation is desirable.
posted by Mitrovarr at 11:03 PM on May 5, 2014 [4 favorites]

It's an amazing story but depressing and kind of confusing. First, that would this have been a possibility for her without flying to this guy's house and living in his guest room? It just doesn't sound sustainable. Second, first the article said she needed all those surgeries because it was a complex case, then it says her feet and ankles were basically butchered into non-existence by bumbling hicks. I guess it's not that confusing that some shitty doctors screwed up but still. The article tries to make the case that this is a trend, and repeatedly references Iraq and Afghanistan, but it sounds like it was just something that happened to this girl.
posted by bleep at 11:20 PM on May 5, 2014

The earlier doctors were obviously just incompetent, but it's very much a thing that later doctors can still look at you and think that it's better to live with pain and limited mobility than lose a limb. Or any body part. I lost a number of months of my childhood to chronic tonsil infections because my doctor didn't believe in removing them but also didn't know how to clear tonsil stones; I'm all about preserving when possible but it became clear by the time I was an adult that he didn't think my pain was a relevant part of the decision at all. Quality of life matters in all sorts of cases and is only recently becoming a routine consideration.
posted by Sequence at 11:28 PM on May 5, 2014 [11 favorites]

The way I wrote that made it sound like I don't think this is a thing people are dong, which isn't what I meant. I just meant the article doesn't talk about anything like a sustainable process for getting these advanced devices to everyone who might need them.
posted by bleep at 11:36 PM on May 5, 2014

My niece has flat feet and related ankle strength/balance issues that have necessitated several surgeries. I don't know that I would say any of them were malpractice-level, but she did seem to gain very little from any of them and possibly lose bone integrity overall due to the numerous surgeries (involving metal pins and lab-grown bone plugs). I've joked with her in the past about Oscar Pistorius (well, before he shot his girlfriend), and I think I have a handle on this as being a reasonable solution. This is sort of where modern prosthetics are taking us anyway. With Pistorius being a world-class runner, the question had already been raised whether switching voluntarily to prosthetics might become a thing in the near future.

Aimee Mullins (TED) is one amputee who's built up an array of different legs and calls them her "superpower". There's another TED by a guy I can't find who also uses different legs/feet for different "jobs" in life including varying his height for social purposes. This is basically where the question of bionics begins -- will someone want to just have a hook, or a working human-like hand ... or an assortment of "Doc Ock" limbs that will enable them to do a lot of things, including things no human could do before? I do think we're a long way from making someone "no longer human", of course, but it's a long trip and it's going to be interesting to see how it develops.

It makes me uncomfortable to think about, but at the same time I'm not able to take an absolutist/originalist position on the human body.
posted by dhartung at 12:50 AM on May 6, 2014 [4 favorites]

Don't amputees also live in pain? There is a MeFite who once described the daily experience, I will look for the thread, but it sounded fairly miserable unless you have consistent long term access to A+ medical care.
posted by Brocktoon at 1:12 AM on May 6, 2014 [1 favorite]

I dated a girl who was born with a (I guess) really severe clubbed foot. She told me that had her father not been a mildly famous surgeon, and rich as hell, she likely would have been able to walk as an adult. You wouldn't know it unless you saw her foot up close, and there was a lot of surgical scars. She considered herself quite lucky.
posted by efalk at 1:26 AM on May 6, 2014 [3 favorites]

I should explain that her father's fame in the medical world got her access to world class surgeons. In her case regular doctors might have easily mangled her foot.
posted by efalk at 1:28 AM on May 6, 2014 [1 favorite]

Took a while to parse that, efalk. She likely wouldn't have, I'm guessing.
posted by flippant at 2:05 AM on May 6, 2014 [3 favorites]

"But Phipps, who was born in a remote, Gaelic-speaking region of Ireland, endured repeated surgeries by doctors who either didn’t know about the casting method or didn’t believe it would work."

This article is a bit odd in that it is apparently an indictment of the Irish health care system [or more specifically the "remote, Gaelic-speaking region[s]"] while simultaneously admiring the development that has taken place wrt prosthetics.

As a nation Ireland is 21st in life expentancy, the US is 35th.

I've been advised that my lower legs may one day need to be amputated in order to preserve my health. It's not that uncommon of a solution to poor circulation or complications from diabetes which can result in infection and death. I don't know much about clubfoot. According to the Mayo Clinic there are degrees though. Clubfoot describes a range of foot abnormalities usually present at birth (congenital) in which your baby's foot is twisted out of shape or position."
I'm quite happy to know that people are spending their working hours designing prosthetics.

http://www.trsprosthetics.com/sports-recreation/climbing.asp

http://www.oandp.com/articles/NEWS_2011-11-01_13.asp
posted by vapidave at 2:17 AM on May 6, 2014 [1 favorite]

Arg WOULDN'T, you are correct.
posted by efalk at 2:27 AM on May 6, 2014

This Occupational Therapist fairly readily chose to have her foot and lower leg amputated when it wasn't healing well after an accident. Her most popular video shows off the Lego leg she made. Her decision to amputate might have been easier because her job was to help amputees, and she knew how well OT and prostheses can work. From her prolific series of videos about life as an amputee, it seems far preferable to living with a messed up limb.
posted by Hello Dad, I'm in Jail at 2:53 AM on May 6, 2014 [4 favorites]

Amputating legs that are causing that much pain, for which she had to take that much medication, doesn't sound like elective surgery — it sounds therapeutic.

I was born with a club foot and have few remaining symptoms as an adult. How lucky I was to get very early care for it.
posted by third word on a random page at 4:14 AM on May 6, 2014 [4 favorites]

First, that would this have been a possibility for her without flying to this guy's house and living in his guest room? It just doesn't sound sustainable.

I got the impression that this guy was doing, excuse the expression, cutting-edge research into prosthetics, so yeah, it's not a thing that would translate into routine care. But it could lead to advances in prosthetic design and installation that do make it out into the general market.
posted by Halloween Jack at 4:51 AM on May 6, 2014

As an aside, I recently saw the Ossur Proprio "smart foot" up close, which is a remarkable piece of engineering, and really does make clear the difference between top end prosthetics and the standard solutions in the developing world: so many advances, as the article said, are driven by Army medical needs. The lower-leg prosthesis generally offered by the US Army to veterans (which can be programmed with routines for e.g driving a car) has a market price of about $12,000, if memory serves.

(This is literally offtopic, but there's a company called D-REV developing a low-cost, multi-axis knee joint for prosthetics in the developing world, to replace the single-axis joint used generally at the moment, where the weight of the foot pulls the leg down when the leg is lifted and the walker has to "flick" it back into place and the downswing, which is intended to provide for a more natural and stable gait for about $80...)

There's another TED by a guy I can't find who also uses different legs/feet for different "jobs" in life including varying his height for social purposes.

That may be Hugh Herr, MIT's head of biomechatronics. He certainly has multiple purpose-adapted prostheses...
posted by running order squabble fest at 5:02 AM on May 6, 2014

Making the decision to undergo an amputation, as opposed to one forced by trauma, is one of the more wrenching ones in medicine to give to a patient- it can come up for reasons as diverse as osteosarcoma to common ones really badly controlled diabetes; peripheral vascular disease is, I think, the most common.

It's not universally disabling or chronically painful, and it's common at the nearby RIC to see patients heading up and down the sidewalk with physical therapists learning the powers and limits of their newfound mode of mobility. But even in the best outcomes it's a hugely sobering reminder of the assumptions we make about the body's integrity, moreso even than the removal of an organ. You are changed, both physically and often mentally, in a very publicly visible way- for many people, you will now be approached as a sufferer, or at best a survivor, before you are seen as a person.
posted by monocyte at 5:07 AM on May 6, 2014 [3 favorites]

I lost a number of months of my childhood to chronic tonsil infections because my doctor didn't believe in removing them

Same here. I practically lived on antibiotics for years.
posted by The Underpants Monster at 5:43 AM on May 6, 2014

This article is a bit odd in that it is apparently an indictment of the Irish health care system [or more specifically the "remote, Gaelic-speaking region[s]"] while simultaneously admiring the development that has taken place wrt prosthetics.

As a nation Ireland is 21st in life expentancy, the US is 35th.

I don't think it's an overall indictment so much as an acknowledgement of the internal variation in care and outcomes within countries. For comparison, the U.S. has some of the best care in the world... for the fraction of the population that can afford it, but clearly not for everyone.
posted by psoas at 5:51 AM on May 6, 2014 [1 favorite]

The earlier doctors were obviously just incompetent, but it's very much a thing that later doctors can still look at you and think that it's better to live with pain and limited mobility than lose a limb. Or any body part.

After I smushed (doctor's word) my finger and had totally failed surgery to repair it, I was in regular pain and couldn't use my finger at all and my hand properly because the finger was in the way (it overlapped my middle and ring fingers, sort of). A few years later I got myself to a different doctor, who offered me either taking out some bone or putting in a prosthetic joint (which I refused because no way was I going to do something that would necessitate surgery every 5-10 years for the rest of my life if I had a choice), but when I suggested that we cut off the painful finger that I am entirely unable to use, he absolutely refused.

So I have a (only sometimes) painful finger that I am absolutely unable to use (I just hold it above the other fingers) that looks weird and has a huge scar on it. I probably would have made the decision to do the same surgery, as it had a chance at going better than it did, but it would have been nice had it been a bit more of a choice, because I often regret it.

(I know, it's more minor than a foot, but it is my dominant hand.)
posted by jeather at 6:01 AM on May 6, 2014 [1 favorite]

Oh, and she has a twin sister too? That must be a fraught dynamic.
posted by psoas at 6:13 AM on May 6, 2014 [1 favorite]

Elective Amputation

Paging Bernard Wolfe . . . Bernard Wolfe to the "vol-amp" courtesy phone, please . . .

[In the not too distant future (1990)] . . . after the horrors of nuclear war, [there arises a movement on both sides] to literally disarm, by voluntarily having limbs amputated. . . . Amputation and prostheses are status symbols . . . one's position in society is inversely proportional to the number of limbs one has. . . . [But] in most cases the amputated limbs have been replaced by nuclear-powered prostheses that enable their wearers to leap tall buildings in a single bound. . . . the Russians and the Americans get together periodically to hold a cyborg olympics. . . .

posted by Herodios at 6:27 AM on May 6, 2014

a young woman opts to amputate her clubfeet.

I wish the Post headline writers phrased this as "opts to have her clubfeet amputated." I had severe trepidation about clicking through the link for fear that she had amputated her own feet at home, which hits all of my body horror hotbuttons.
posted by Admiral Haddock at 6:31 AM on May 6, 2014

With Pistorius being a world-class runner, the question had already been raised whether switching voluntarily to prosthetics might become a thing in the near future.

I had a sort of Aha moment in this regard a couple of years ago when someone pointed out that the act of cooking food is effectively a prosthetic stomach, meaning that people have been doing this for longer than recorded history.
posted by Etrigan at 6:55 AM on May 6, 2014

My brother's friend was in a terrible car accident about 20 or so years ago and his leg was crushed and mutilated, leaving him with very little usable bone beneath the knee. After about 15 years worth of constant surgery and chronic pain he made the decision to have his lower leg amputated and go with a prosthesis. He still has regular visits to specialists and occasional day surgery procedures, and will have to do so for the rest of his life, but according to him his quality of life has increased ten-fold.

Tough decision.
posted by h00py at 7:15 AM on May 6, 2014

As a nation Ireland is 21st in life expentancy, the US is 35th.

... in aggregate. Broken down region by region, the picture is very different.
posted by mhoye at 7:30 AM on May 6, 2014 [2 favorites]

This article is a bit odd in that it is apparently an indictment of the Irish health care system [or more specifically the "remote, Gaelic-speaking region[s]"] while simultaneously admiring the development that has taken place wrt prosthetics.

As a nation Ireland is 21st in life expentancy, the US is 35th.

I think it is a little misleading, in that my understanding is that the Ponseti method has really only become standard in the US in the past 15 years or so, and orthopedists in the US initially resisted it pretty strongly. People her age in the US also generally got surgery for clubfoot, and surgery frequently had lasting complications. Here's a relevant story from NPR.

But also: Ireland in the early 90s was a much poorer country than Ireland is now. There are probably healthcare disparities in every country, and my impression has always been that Ireland's system is relatively unequal by European standards. And life expectancy probably measures more the quality of routine primary care than the quality of the high-tech fancy stuff. The US puts a huge percentage of our resources into high-tech specialist care, and that, as well as our fundamental inequality, is probably reflected in our outcomes. You get a lot more bang for your buck in terms of increased life expectancy if you help people manage diabetes and blood pressure than if you do a better job treating rare cancers.
posted by ArbitraryAndCapricious at 7:50 AM on May 6, 2014 [3 favorites]

With regard to the rural Irish doctors, I was actually reminded of a criticism of Mother Teresa - that she didn't take people's pain as seriously as she might have because she was grounded in a religious tradition that considered suffering to be redemptive.
posted by Naberius at 9:15 AM on May 6, 2014 [2 favorites]

I have two cousins whose clubfeet were treated with casting in the 1980's, but on further reading it might have been Kite's method rather than Ponseti's.
posted by The Underpants Monster at 9:30 AM on May 6, 2014 [1 favorite]

I don't understand people's horror over amputating clearly dysfunctional limbs. I mean, maybe on a gut level, but in this case? Clearly the right thing to do. Is there some kind of conflict with the Hippocratic oath I'm not aware of?

This is the future. How long until the first person removes a perfectly fine, normal limb to replace it with an artificial one that's better? 10 years? 15?

Don't laugh. I interviewed Hugh Herr, mentioned above, who lost both feet during a climbing accident (caught in bad weather). He still climbs, and has hacked himself various prosthetic feet for different climbing situations: cracks, slabs, etc. Need a few more inches to reach that hold? Bingo. Now imagine you're an athlete in a sport where winning and losing is decided by millimeters and thousandths of a second.
posted by gottabefunky at 11:35 AM on May 6, 2014

Interesting article, but as evidenced by a couple of the comments here this sort of thing is not unheard of. Not very common for sure, but I have seen it quite a few times in my quarter of a century in medicine. I can't speak to the experience of the woman in the article, but even with state of the art care some limbs have problems that can't be fixed and amputation is a reasonable option Trauma is the most common reason for this but I have seen various congenital anomalies leading to amputation as well. Typically it is viewed as a last resort after multiple other approaches have been tried. Sometimes the patient requests it, other times the surgeon brings up the idea. In any event the results are usually good; given the long and diffucult road leading up to these amputations, I would hesitate to even call them elective.
posted by TedW at 12:19 PM on May 6, 2014 [1 favorite]

Is there not phantom pain post-amputation? I thought that was the problem with this sort of elective amputation; that the pain would remain even after the limb is gone.
posted by amro at 12:55 PM on May 6, 2014

Is there not phantom pain post-amputation?

In most of the cases I have seen the amputations are done for functional reasons rather than pain, which makes phantom limb pain less likely. It is a major problem however. There is some support for the idea that controlling pain pre-amputation reduces the risk of phantom limb pain; this study is worth a look if you are interested.
posted by TedW at 1:47 PM on May 6, 2014 [1 favorite]

Correction: I linked to the accompanying editorial; the actual study is here.
posted by TedW at 1:51 PM on May 6, 2014

I don't understand people's horror over amputating clearly dysfunctional limbs. I mean, maybe on a gut level, but in this case? Clearly the right thing to do. Is there some kind of conflict with the Hippocratic oath I'm not aware of?

I think it's partly about risk - doctors have it drummed into them not to perform unnecessary surgery (especially in cultures with a tradition of malpractice suits). Even putting someone under anaesthesia represents a small but measurable risk.

And it's also very final - certainly, someone I knew spent a long time making the case that, yes, she understood that a surgery might just be around the corner that could give her some level of function, but that this was a bet being made against current pain and impaired function. And that was for a relatively minor operation...
posted by running order squabble fest at 3:43 PM on May 6, 2014

This:

"her grandmother said no man would marry a woman without legs, and her mother sobbed at the very thought."

Versus this:

'"Everyone is so hung up on having the perfect child," Phipps said. "All 10 toes, all 10 fingers. It’s better to be without them than be in pain."'

I tend to skew pretty hard towards personal/bodily autonomy over familial/social harmony on this kind of stuff, admittedly, but it sounds like the adults in her life - from bad doctors to awful opinions wielded like fact towards a vulnerable adolescent - did a whole lot to put her in a lot of pain for a long time. And that sickens me, no matter how much they believed they were doing the right thing.

Now, as an adult, anyone who said to me "no man would marry a woman without legs" if I happened not to have any or was trying to make the same decision would get a swift "go fuck yourself" - but as a kid/teenager I'd have taken that pretty hard to heart. Hence my disgust.
posted by terretu at 2:28 AM on May 7, 2014