In patients with the neuromuscular disorder neuralgic amyotrophy, control of the shoulder and arm from the brain is disturbed. This plays a role in the residual symptoms that these patients experience. Specific physical and occupational therapy improves arm function, concludes Renee Lustenhouwer of the Radboud university medical center in her dissertation.
You may never have heard of it, but it is estimated that over 17,000 Dutch people suffer from neuralgic amyotrophy each year. It is a neuromuscular disorder causing attacks of extreme pain and paralysis of muscles in the shoulder, arm and/or hand. Little is known about the underlying cause, but a combination of an immune reaction and physical strain on the arm and shoulder plays a role. That is why it is more common in people who often practice sports or do heavy physical work.
The symptoms cause patients to move their arm and shoulder abnormally. And that leads to another problem: two-thirds keep these abnormal movement patterns after an attack. As a result, patients cannot move their arm properly, experience pain, and tire quickly. Renee Lustenhouwer of the Department of Rehabilitation investigated causes and treatments for these persistent abnormalities.
Lustenhouwer: ‘Although the nerves and muscles of these patients, in other words the "hardware", largely recover after an attack, the movement of the arm and shoulder remains abnormal. We therefore thought: Maybe there is something wrong with the "software", so with the control of these movements from the brain.’ The researchers used an MRI-scanner to map the brain activity of patients with these residual symptoms of neuralgic amyotrophy. They performed the same measurements on healthy volunteers. Because it is not allowed to move in such a scanner, the participants were asked to imagine certain movements. The brain activity during imagination is very similar to that during real movements.
These measurements revealed that the control from the brain was indeed disturbed in patients. Certain areas of the brain were much less active. ‘You could say that the brain of these patients was programmed incorrectly during and immediately after the attack’, says Lustenhouwer.
Improved arm function
So can that aberrant program be "reset"? 'Yes’, says Lustenhouwer. 'Through specific physical and occupational therapy, patients can relearn the movements the right way.' Lustenhouwer compared the effects of this special rehabilitation program with those of regular care. The results were positive: After seventeen weeks of treatment, the arm function of patients who underwent the specific rehabilitation program had improved compared with patients who received regular care.
'It is very important that we have shown aberrations in the brains of these patients that cause persistent symptoms’, argues rehabilitation physician Jan Groothuis, one of the study leaders. 'As a result, patients understand it better, and they also realise that specific therapy is needed to relearn movements.'
Groothuis and his colleagues are busy with dissemination of the rehabilitation program. For example, they provide training sessions for physical and occupational therapists in the Netherlands. The department also regularly sees foreign patients for this treatment. 'Ultimately, all patients with long-term symptoms of neuralgic amyotrophy are going to benefit from this’, Groothuis says.
More information about this PhD thesis defense
PhD thesis defense of Renee Lustenhouwer on March 8th at 4.30 p.m. Title of dissertation: Recovery in Neuralgic Amyotrophy - an interplay between peripheral nerve damage motor dysfunction and the brain (available online after March 8th). (Co-)supervisors: prof. dr. B.G.M. van Engelen, dr. J.T. Groothuis, dr. I.G.M. Cameron, and dr. R.C.G. Helmich. The defense can be followed via this livestream.
The research described in this thesis was financially supported by the Prinses Beatrix Spierfonds.