After her stroke, Francine Corso, a software engineer who worked on Nasa’s lunar lander, was housebound from 1992 to 2001. Her left arm was twisted up near her neck, making it difficult to pull on a blouse, and her fingers curled so rigidly that her nails buried themselves in her palm. When she finally learned to rise from her wheelchair, her contorted left leg had the so-called horse gait of many brain-injury victims – she stepped toe-downward, and then fought to keep her foot from rolling over.
Now, with injections of botulinum toxin every three months, she says, “I’m completely transformed – I drive, I volunteer, I take art classes.” Her fingers are so relaxed that a manicurist can lacquer her nails red. Botulinum toxin, the wrinkle smoother best known by the brand name Botox, has many medical uses, some official and some off label. It helps dystonia victims regain control of spasming muscles, actors who struggle with flop sweat slow down the flow, and children with clubfoot avoid surgery.
Its use in stroke victims is still off label – that is, it is not approved for that purpose by the Food and Drug Administration. But it is so widely accepted that Medicare and other insurers. Nonetheless, said David Simpson, director of clinical neurophysiology at Mount Sinai Medical Center in New York and a leading botulinum researcher, only about 5% of the stroke patients who could benefit from its use ever get it.
“Primary care doctors who oversee nursing homes often do not know about it,” he said. Relatively few doctors are trained to do the injections, which go much deeper than dermatologists do to erase frown lines. And most neurologists are in the habit of prescribing antispasticity drugs, which are oral and inexpensive, but which cause drowsiness and weaken every muscle in the body, not just the target ones.
Corso, 66, never heard about the treatment from her first neurologist, whom she called “Dr Bad News” because he told her family she would die and then kept telling her she would never walk. “I heard about it from on NBC,” she added. “That’s when I came into the city and found you people.” Botulinum cannot restore the use of muscles when stroke has destroyed the brain region that controls them. But patients look and feel better and often find it easier to dress, hold objects and bathe themselves.
Sources: The Times Of India