For many years this form of treatment helped, although neck spasms and pain began to reappear. “My upper body was a twisted mess. I had trouble keeping my head straight and still. A body in constant motion is exhausting,” she said. Furiate, who nearly gave up finding adequate treatment, said “I struggled for years with this. It got to the point where I never left home. It interfered with my ability to drive, to work, to socialize, to eat and to do many things I had taken for granted. I used to run up to New York and take all kinds of day trips. I was quite the social butterfly, and unfortunately, all of that stopped. My entire life vanished.” Cervical dystonia consumed every ounce of her energy to carry through another day and thus, narrowed her world as her ability to maintain her previous existence was transformed.
After losing her job and the health care benefits it provided, a friend recommended that she seek help from the VA. Furiate, who had served in the Air Force from 1978 to 1984 achieving the rank of Sergeant, enrolled in VA health care and visited the Baltimore VA Medical Center for routine medical appointments. There, clinicians referred to her a staff neurologist in regard to the cervical dystonia. After living with the disorder for so many years and the daily neck exercises and physical therapy no longer effective, she did not entertain high hopes for improvements. But this visit changed her life.
At the Baltimore VA Medical Center, Dr Nelson L. Kohn, a physiatrist with experience treating patients with cervical dystonia, began treating Furiate’s cervical dystonia. “There is no known specific cause, but basically, it’s as if you enter into a war with your muscles. In Linda’s case, the majority of the involved muscles are in her neck. In other cases, the affected muscle could be in a hand, a foot, arm, leg or any combination thereof,” he said.
Kohn explained that typically, muscles groups work in concert with each other such that when one is contracted, the other is relaxed. Dystonia disrupts balance in between muscle groups causing involuntary and often painful spasms, resulting in twisting, and uncontrollable movement.
“Every person with dystonia is unique, and treatment must be highly customized to serve the needs of each individual,” Kohn said. “The goal is to diminish the muscle spasms, pain, abnormal postures, and improve quality of life with the least amount of side effects. To achieve this goal, treatment requires open communication and a deep trust between the patient and physician, especially if the treatment plan includes injections of Botox into the neck for cervical dystonia,” he adds. “For optimal results, the injection has to go into the precise muscle in the neck.”
Botulinumtoxin–marketed as Botox for cosmetic and medical purposes—is a derivative of the poison from the bacteria that causes botulism, approved in 2000 to treat cervical dystonia in adults. Injected into the affected neck muscles, it offers a localized method of alleviating and relieving symptoms. “It eases the severity of spasms in the targeted muscle, however, inadvertently misguided Botox injection may result in serious side effects including swallowing and breathing difficulties,” Kohn said.
Kohn devised and implemented a treatment plan that included frequent injections at the beginning of treatment to less frequent injections based on Furiate’s need as time progressed. “Because it essentially paralyses the muscles, the injection must be delivered precisely,” says Kohn, who uses in electromyographor (EMG) machine to ensure the injection is accurate. The Botox injections, combined with the exercise regimen that Furiate had been doing resulted in a remarkable improvement, enabling her to resume many of her previous activities. Furiate hopes to become symptom free once again without the use of any medical interventions other than daily neck exercise and breathing exercises.
With Furiate’s severest symptoms eased, she found herself stage center after winning a national essay contest about struggling with the disorder and the subsequent relief that came after a year of treatments. The contest prize included a trip to California for a dystonia conference and $10,000 which she donated to the Bethesda Naval Hospital to help wounded service men and women returning from Iraq.
“I still have to know my body. I need to know how far I can push it, and I can feel when it’s getting to be close to needing the next Botox injection,” she said. Now Furiate can count several months between treatments, for which she said, “I’m grateful.”
SOURCE:maryland.va.gov
