Never again on the legs

For many amputees, the prosthesis soon ends up in the closet. About the failure of medical technology.

Two legs of an adult man who has a prosthetic lower leg on the left and his healthy leg on the right. Both feet stuck in shoes

Petra W. is a woman with finely polished nails and accurately coiffed ash blond hair. Someone who is happy to be told that she looks 50 years old. But she is 87 and sits in a wheelchair with only one leg, the left one. When asked about her condition, she says: "It’s not nice now", or "if you leave out the bad, it goes somehow well.“ She then gets glassy blue eyes and prefers to roll on or change the subject. Her leg was amputated two years ago. At the time, with her husband by her side, she had every intention of learning to walk again.

But no sooner had she returned home from the operation than hurdles upon hurdles began to build up before her. Their statutory health insurance did not want to pay for any artificial leg at first. Months passed. Her husband struggled. Then she got a prosthesis, which Petra W. in a blue bag on the lap went to the physical therapist. Once, when we met, she had just come from one of these appointments and raised the bag in the air in greeting and said with a slightly indignant undertone: "Look how heavy the bag is!. That’s five kilos!“ Her husband smiled mutely. The physiotherapist had no idea about artificial legs. She was more helpless than Petra W when putting it on. himself. Later called it, the leg does not fit at all. In the meantime, the operation was over a year ago. Again the husband fought with the health insurance company. Finally a new leg came. But then Petra’s husband became demented, wanted to leave the apartment at night and take the bus home. She could hardly hold him back on one leg on his two. He had to go to a nursing home. Petra W. has since put the two blue bags with the legs into a cupboard.

One might think Petra W. just had bad luck. After all, journalists have often reported on people who had dramatic accidents, lost a leg, but then soon walked through life smiling again. Thanks to prosthesis. These stories of progress give courage and are so beautiful. We journalists liked to choose this same old narrative.

Only a few walk again

But there are several experts who say that things don’t usually work out so perfectly. Petra W’s story, on the other hand, is quite ordinary.. Normal is: Never again on the legs. That knows Uta Gaidys, a nursing scientist at the University of Applied Sciences in Hamburg, Germany. She has interviewed many hundreds of amputees. Andrea Vogt-Bolm, head of the independent Ampu-Vita association, which provides help and advice to amputees in northern Germany, confirms this. And finally, trauma surgery doctor Melissa Beirau. She helps accident victims walk on a prosthesis every day at the Berlin Trauma Center.

But how many amputees actually make it onto a prosthesis if the success stories aren’t as common as we think they are? „There is no systematic data. No one cares", answers Beirau. Only the study of Uta Gaidys from 2013 is in her memory. Gaidys interviewed 515 amputees with the help of two statutory health insurers, up to four years after the amputation. The vast majority, 87.1 percent, had a prosthesis. But less than half- 41.4 percent could walk with it enough to cope with everyday life. Many barely walk more than a few minutes despite prosthesis. You need a wheelchair. Two thirds are therefore dependent on the help of relatives or strangers after the operation. Cooking, washing, doing errands outside the home- From now on, they can no longer do many things on their own. They complain that the most important cause of their need for care is not being able to walk enough.

At the same time, many even have two different artificial legs, knows Vogt-Bolm. And Gaidys’ study shows that a large proportion- 87.1 percent even put on the prosthesis two to six times a week. But then they obviously don’t get very far. „Most only wear them for a few minutes. Otherwise they lie around in the famous blue bag", says Vogt-Bolm.

In advertising, the prosthesis is as chic as a tie

Surgeon Bernhard Greitemann removes patients’ limbs himself, and he runs a rehabilitation clinic near Osnabruck. He dislikes the story of useless prostheses: A good 80 percent of amputees left his clinic on the prosthesis. They could walk and climb stairs. But how far they can really get on the artificial leg in everyday life and how far they can walk with it years later, he does not know he admits, he does not know.

Medical technology market leader Ottobock in Duderstadt was shocked when Gaidys presented her study there in person, she reports. The visit was also a shock for her: "I walked into this entrance hall and thought, now I’m in a science fiction movie. That was unbelievable.“ There would be prostheses that bend and stretch by smartphone. Those with whom you walk faster than normal, those who actively assist in sitting down and standing up. Medical device manufacturers’ advertisements show amputees in suits, on the sunny side of their careers, smiling and dynamic, almost as if an artificial leg were the new tie.

Slice by slice into infirmity

But then what about Petra W. and all the others gone wrong? „Surgeons don’t like to hear it. But an important reason is that amputation is done too late and then bit by bit. Big toe, forefoot, Lower leg, upper leg, then the other leg", says Gaidys. Those operated on are then enormously weakened and unfit due to the long period of infirmity and the constant interventions, she says. When they need a prosthesis- from the lower leg up, they can no longer manage it with the best will in the world. They end up in wheelchairs. Vogt-Bolm confirms that the classic patient has undergone dozens of operations.

The accusation that amputations are performed too hesitantly is never reflected in the regular press releases of the professional societies. On the contrary: they even plead for more treatments before amputations are made. The German Society for Internal Medicine complains that most amputations in diabetics could be averted, i.e. delayed, with vascular conservation measures. The German Society for Angiology repeats the same for its patient clientele, those with circulatory disorders. Both diseases are by far the most important causes of amputations.

Removing a limb is considered a doctor’s failure. That is why it is maintained until nothing else works. This approach is also the most lucrative by the way, Gaidys clarifies: leg-preserving treatments and multiple slice amputations bring in far more money than a one-time amputation. And because, according to various health economists, the more doctors they treat, the more they get paid, this creates an incentive to do so.

In good faith against the prosthesis

„Again and again there is talk of salami tactics", says trauma surgeon Bernhard Greitemann, indirectly admitting that there is even a word for practice among doctors. But then comes a clear denial: "This criticism is not correct. Of course there are revisions after amputations. But the primary goal must be the preservation of the limbs, also for reasons of mobility. Without forefoot you can walk without a prosthesis, you can no longer walk without a thigh.“

He sees the grievance elsewhere in the health care system. Amputees fall into two classes: the legally insured and the victims of occupational accidents. If someone has an accident on the way to work and loses a leg, everything is done to help them get back on their feet. The Employer’s Liability Insurance Association does not want to pay for expensive occupational disability and usually reimburses prostheses and rehabilitation without complaint. „These people almost always learn to walk on a prosthesis.", says Beirau.

But most amputees are not among the lucky ones. They have lost their leg due to diabetes or a circulatory disorder, more rarely as a result of a tumor. The statutory health insurance must pay in these cases. „It is standard that the reimbursement of the prosthesis is then first refused, especially for the over-60s. Then you have to initiate an appeal procedure," says, describes Beirau. It drags on. Meanwhile, the amputee is already squatting in a wheelchair in his apartment. The few existing muscles fade. He begins to go about his daily life in a wheelchair with outside help. Then the health insurance company may approve an artificial leg months later. Now an orthopedic technician has to make this construct. Again, months pass from cost estimate to finished product. Then the legally insured amputees finally have their leg, but no one to explain to them how to walk with it. Locally based physiotherapists often don’t know about prostheses, says Beirau. Rehabilitation is rarely granted from the outset. Once again, those with statutory health insurance have to fight. If they ever end up in a rehab facility, they are almost always so physically weak that three weeks of spa treatment is not enough so much is routinely granted- according to Beirau definitely not enough, in order to lift itself on the wheelchair into the free stand highly. „Learning to walk on a prosthesis is hard work, even for a newly operated competitive athlete, for which he needs a strong will.“ And Greitemann adds: "Cancer patients often have very high amputations. They are mostly young, but even for them it is difficult to learn to walk on a prosthesis.“

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Those who have had an accident are among the well provided for

Only accident victims get the intensive program after amputation without being asked. At the Unfallklinikum Berlin, each patient even has his or her own therapist. The training takes place in small groups of three to five people. „That is luxury. If the legally insured got this, many more amputees could walk better", says Beirau. The amputees work out their arm and leg muscles in the gym. They receive daily physical therapy and learn to walk on special equipment at the walking school. „The crowning glory is falling onto a mat with the prosthesis and standing up again on his own. Many people are afraid of this in everyday life, explains Greitemann.

Two-class rehab is a self-perpetuating system. Some victims of occupational accidents are given a cure for the umpteenth time, sometimes even as a condition for the approval of a new prosthesis. Jorg Stein (name changed) is such a case. Already in 1975 he lost his leg in a motorcycle accident during his training. Since then he has been an above-knee amputee. Stein, 67, has two wheelchairs and has always had a prosthesis, which was always paid for by the Employer’s Liability Insurance Association. Now he has received a new prosthesis model and is once again facing a course of treatment.

It also works with the scooter

Admission interview at the Berlin Accident Clinic: Stein pushes the stump of his left thigh into the shaft of the prosthesis. He shifts his weight from one leg to the other. „Now walk from here to the wall over there", says Beirau. Stein slowly wobbles out from behind the chair. He drags his left leg as if it were made of wood, rigid and immobile. But he wears one of the most modern prostheses, with which climbing stairs and adjusting steps would not be a problem, if the wearer has learned how to load the knee joint so that it bends and extends. „To do this, he has to step with his heel and then push off from the ball, i.e. apply force. He has got used to it differently", says orthopedic technician Christian Hartz. Stein holds on to a railing as he walks up an inclined plane, limping and swaying before the eyes of the experts. Then a few steps lead downward. The obese man stops and snorts audibly. He came to the clinic with the scooter, an electric wheelchair. He hesitates. „Holding on is allowed", shouts Beirau. „I’d have to practice now, Stein replies. But then he puts his healthy foot down with a quiet fear in his face The patient stands on the step and moves the artificial leg rigidly to the side. „How far can you get with the prosthesis alone??“, asks Beirau. Stein sweats. „I still use a crutch. So, a few meters.“ Astonished silence in the group. „There we have something to do", Beirau says to his colleagues and to the patient: "What do you want to achieve??“ „Already learning to walk better, Stein answers tonelessly and adds. „But I have my doubts.“

The patient is not particularly motivated for rehab, Beirau notes. „A patient with health insurance would cry if he knew that.“ „50 percent of the success results from the attitude", says Hartz. Lack of motivation is the third important reason why many people no longer manage to get back on their feet.

After Petra W. When she lost her husband to dementia and he fought for a year and a half to get a prosthesis, her will to learn to walk was also broken. When the bell rings at her apartment door, she now pushes the heavy door open a crack with great effort. Then the wheelchair usually tilts, and we’re talking through the gap. At one point, the television blares in the background. „I dropped the remote control, she explained. ÜWe’d rather not talk about her artificial leg. Otherwise she’ll be in tears.

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