|
|
Current and Breaking News for Professionals, Consumers and Media |
|
|
|
|
|
|
| Current and Breaking News for Professionals, Consumers and Media |
|
|
|
|
|
I simply woke up one morning with a "stiff or wry neck"in 1992. I recall "my neck felt "funny," There was something wrong with it. It was as though some invisible force was pulling my neck and I was resisting. Yet, the more I tried to resist the pulling sensation the greater the sensation became.Quickly I developed spatial disorientation, began having falls, developed an intoxicated gait abnormal looking postures and dealt with incredible scalding-like muscular pain on a daily basis. Through it all, I continued working in one of the busiest medical centers in the U.S. adapting rather nicely, often rearranging my patient rooms during my shifts. Within months in 1992 my neck was not becoming any better and my head hung to one side weighing like a two ton rock. It became frozen in position, locked and causing intense discomfort. Life began getting difficult, almost unbearable and not a single physician was able to diagnose my symptoms. Eventually I diagnosed myself by finding a picture of a woman with a similar condition in a classic neurology textbook. The doctors I encountered, the specialists, all seemed puzzled - confused when I entered their offices to announce that I had found a diagnosis. It seemed to me as if they wanted to say something to me, but couldn't find the right words. A stress-related disorder? A "woman's disease?” By then my hands had begun to fly up into the air gripping my hair in an effort to stop the violent twisting and turning of my neck. While this had the effect of stopping my neck from flailing around; it was only a very short term solution to what was to become a lifelong cureless problem. When I walked I looked like someone who had been in a bar for too long and had too much to drink - I knew people thought that I was drunk, intoxicated, perhaps they thought I was an alcoholic. When using public transport I learned to run past people so that I could get an unoccupied seat while at the same time avoiding those seats reserved on the public transit system for "the disabled" - after all I wasn't one of them! At that time little did I know that my symptoms were classified into a group of disorders known in neurological circles as "chronic disabilities". I tried wearing a soft cervical collar at work to control the twisting and spasms. Patients and friends wondered why I was wearing such a thing. I always gave the simple answer -"stiff neck". Then began a long tedious 16 year ordeal of being "fed "oral medications used to control every other neurological condition - tics, Gilles de la Tourette syndrome, Parkinson disease, seizures - except dystonia. Dystonia was, and remains, as cureless as it was in the early 19th century, still being described as a "hysterical disorder". Driving became impossible and I relocated to Manhattan where Botox was available to patients. When injected into muscles, it would temporarily stop my spasms for a period of 10 to 12 weeks. As far as I was concerned, I was facing retirement in my mid-20s. Nursing was my livelihood and I loved it. I hated looking in a mirror or a photograph as I was distressed and upset at the person looking back at me. I didn't like that person. Just as the intenseness of my green eyes gazed at me; so did the posture which I saw as grotesque and horrible. There were moments when I felt caged in by the disease; it caused me to live a life that was lonely, isolated as well as a life of social embarrassment. In public I began wearing a variety of scarves and sweaters with collars - they hid the physical distortion I saw in the morning each day. I stopped wearing dresses. The mental anguish persisted, often in silence unbeknownst to family, friends and colleagues. Within time immunity to Botox developed and I began clinical trials with a newer form of botulinum toxin, one of the deadliest poison known to man, called MyoBloc. I derived benefits from this toxin for 8 years, even being able to ride my bicycle again. Then in 2004, immunity to MyoBloc developed, and the toxin no longer worked. Oral medications were losing their power, if any, over my dystonia and I began investigating the neurosurgical procedure called Deep Brain Stimulation, placement of a brain "pacemaker" that could override my misfiring neurons and diminish symptoms of dystonia. It was also a condition for which there was little if any treatment that would alleviate the symptoms, the spasms, the exhaustion, the utter discomfort and the feeling of despair. I didn't want to live in darkness when there was light. I also was tired of alternative or complementary care. But I wanted a treatment that was more permanent and DBS was it. An online search brought me to Weill Medical College of Cornell University and Dr.Michael G. Kaplitt, MD, PhD. With the procedure I would be able to just live: To simply "be still ", yet live a life in motion. By Nov 4 2003 I had signed the consent form for the procedure and sought out a photographer to help me document my journey. I embarked on the journey into Deep Brain Stimulation on Dec 30, 2004 once my graduate school semester was completed. The Operating Room was filled with anesthesiologists, nurses, doctors and electrophysiologists - I was surrounded by a staff of 15 people at all times. Within twenty-four hours of the nine hour brain operation, I was walking back to my apartment from the hospital eating and laughing. I had not experienced any of the associated risks- seizures, stroke, hemorrhage or headaches. I admit the surgery is not "the run of the mill "surgery. Nor is it a CURE. The treatment uses a surgically implanted device, similar to a cardiac pacemaker, to deliver carefully controlled electrical stimulation to precisely targeted areas within the brain. Stimulation of these areas appears to block the brain signals that cause the motor symptoms associated with dystonia. I returned to Weill Cornell for programming of my pacemaker on Jan 12, 2005 with a new outlook on life. I started my own journey towards functionality, and normalcy. Http://community.wegohealth.com/groups/dystonia www.HealthNewsDigest.com Top of Page 
|
Contact
Us | Job Listings
| Help | Site
Map | About Us
Advertising
Information | HND
Press Release | Submit
Information | Disclaimer
Site hosted by Sanchez Productions
