For eight years she did what the GP said and what other practitioners said: try to live with it. But that was no life for Annelies Bootsman (50). She is one of tens of thousands of patients who have long-term complaints after a concussion.
“I have been rehabilitating in vain for two years. Just registering for a rehabilitation clinic already took three months. In the meantime I could no longer function: not at work and not as a mother of two small children,” says Annelies. The children went to grandma and grandpa, she could hardly have anything. And nothing helped.
Do not overreact
“After six weeks you laugh about it,” the neurologist had told her. Shortly before that, she had been hit on her bicycle by a motorist who ran a red light. She had not lost consciousness.
The MRI scan that was made showed nothing in the hospital. But she continued to suffer. A few months later, the verdict was: don’t act like that. The GP didn’t say that literally, but that’s how it felt for Annelies.
Acquired brain injury
She’s not the only one who feels this way. Many of her fellow sufferers experience the same. Months after a concussion, they are told that they are suffering from burnout. Or they are referred to a psychologist.
What you can’t see isn’t there. It’s what some 200,000 people experience dealing with acquired brain injury (NAH). Often after a house-garden-and-kitchen accident, during sports, or sometimes as a result of another condition that arose after birth.
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Avoiding stimuli
Annelies also knew that after a concussion you can tolerate few stimuli for a few weeks and have to rest a lot. When the overstimulation only got worse, she did what many fellow sufferers do.
She rested a lot, avoided sunlight and did not go to crowded places. But what she didn’t know is that it is precisely the long-term avoidance of stimuli that can cause major problems.
Learning to live with it
Retired medical sociologist Eric Hermans bundled the stories of these NAH patients in a book. He was surprised that so many people continue to walk unnecessarily with complaints for so long.
Because he mainly sees what goes wrong with people like Annelies: they are not properly referred. “Learning to live with it is the approach in the Netherlands, also at many rehabilitation clinics, but that is not necessary at all,” he says.
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‘Light turned on again’
“It took years before I understood that a filter broke in my head due to the blow,” says Annelies. She heard on the radio about a therapy in America, where they make a more detailed MRI scan of the brain in a clinic than in the Netherlands.
“And then you suddenly see something: the course of smaller bloodstreams in your head that no longer flow properly.” With simple tests, memory exercises and physical exercises, doctors were able to map out how she experienced stimuli. “It cost me a fortune, but for me the light has come back on.”
Not or incorrectly referred
Eric Hermans spoke to dozens of Dutch patients who boarded the plane chronically tired and overstimulated and who returned home with much more energy after a week of intensive treatment in America. Scientific research is needed into the method, he believes.
But the solution for many people who have complaints is now simply here, with their GP. “Only one in ten patients who need rehabilitation gets it. People who need help are referred incorrectly, or not at all.”
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‘At least go and have a look’
According to Hermans, psychologists and occupational therapists know too little about the exercises with which you can stimulate the right areas of the brain. And insurers want to remove the few treatments that are still reimbursed from the package. Under the same motto: what you don’t see, isn’t there.
Annelies Bootsman especially calls on insurers and rehabilitation clinics to at least take a look in America. It is already a gain for her if they only adopt part of the methods or recognize that the solution does not lie in learning to live with them, she says.
Life back
“They can safely say that it is a placebo effect. But I have been back from that treatment for almost four years,” says Annelies.
“I’m working again, I’m playing at a modest level in a tennis competition. I don’t get tired anymore and I don’t feel sick anymore. I have my life back.”
