Here’s an article about my DBS for you- as promised…
” Beka’s Journey ”
Many people who contract an incurable disease devote themselves to finding a cure. I wasn’t one of those people. I was a 39 year old Registered Nurse who worked in the Critical Care Division of New York-Presbyterian Hospital in New York City, yet was diagnosed with dystonia in 1993. Dystonia is a neurological (movement) disorder characterized by overactivity of a specific muscle and/or group of muscles which causes involuntary movements, tremors and bizarre postures. In my case the cause for my dystonia has never been identified.
I simply woke up one morning with a “stiff or wry neck”. 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 did try to resist the pulling sensation the greater the pulling sensation became “.Quickly I developed spatial disorientation, began having falls, developed an intoxicated gait, yet I continued working in one of the busiest medical centers in the U.S.
Within months my neck was not becoming any better and my head hung to one side weighing like a two ton rock. It was frozen in position, locked and causing intense discomfort. Life was getting difficult, almost unbearable. And not a single physician seemed to be able to diagnose my symptoms. Eventually I self-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 now 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 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 13 year ordeal of being ” fed ” oral medications used to control every other neurological condition – tics, tourettes, Parkinsons, seizures except dystonia. Dystonia was and remains as cureless as it was in the early 19th century. 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 that had 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, the toxin no longer worked. Oral medications were loosing 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 her misfiring neurons and diminish her 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 utter despair. I didn’t want to live in darkness when there was light. I also was tired of alternative or complementary care. I wanted a treatment that was more permanent and DBS was it.
An online search brought me to Weill Medical College of Cornell University. I had investigated the procedure out West and elsewhere obtaining several consultations. Within an hour of leaving the office, I knew the procedure would help correct and diminish many of my dystonic symptoms which were now affecting my work performance as an ICU nurse especially in the Open Heart Unit at NYP-Presbyterian where former President Clinton had recovered from his surgery. The idea of the procedure alone gave me much needed hope – It would reduce the constant planning of daily activities, diminish the intense pain associated with the disorder and would improve my quality of life – allowing me to enter a restaurant without being stared at blatantly and, maybe, possibly return to a social life marked by cycling, writing, and redeveloping social relationships. My neurosurgeon was competent, compassionate, reassuring and had not acted as a high brow consultant that I had met years ago – during 5 to 6 years of misdiagnosis. I wanted to live. To simply “be still “, yet live a life in motion.
By Nov 4 I had signed the consent form for the procedure and sought out a photographer to help me document my journey ( www.parasphotography.com/beka.html ) . Totally unbeknownst to the dystonia community I embarked on the meticulous journey into Deep Brain Stimulation on Dec 30, 2004 once my current 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. I recall being constantly asked by the staff “if I was OK ?” Eventually I began jokingly replying “that I was not ! “. I felt no pain during the procedure except for a vibratory effect as my skull was drilled open. But within twenty-four hours of the nine hour brain operation, I was walking back to my apartment from the hospital eating and laughing. The operation had begun at 5:45 am and was completed by 6 pm. I was out on Fifth Avenue buying a new wardrobe that Sunday and attending mass at St. Patrick’s Cathedral within 48 hours of undergoing major brain surgery. I had not experienced any of the risks- seizures, stroke, hemorrhage or frontal lobe headaches.
I admit the surgery is not “the run of the mill “surgery with Medtronic, the innovative company that manufactures the device. 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. To date, a handful of patients with dystonia have undergone the procedure, few with the type of dystonia I exhibited – cervical or neck dystonia that had progressed to a hemidystonia. It turned out to be that I was the first patient with dystonia to undergo the procedure at Weill-Cornell. It’s absolutely essential that others considering DBS become as well-informed as they can be and utilize the www.newhopefordystonia.com site that has a listing of qualified physicians who perform the procedure.
I returned to Weill Cornell for programming of my pacemaker on Jan 12, 2005 with a new outlook on life. I had gone and entered my own journey towards functionality, normalcy and life. DBS has proven to be my ticket out of the realms of a devastating, debilitating disorder called dystonia. No longer must I plan every aspect of my life; no longer am I surrounded by dystonia or the despair of depression and pain. I was free to return to a life that had begun 15 plus years ago- a life filled with promise and hope. It all is rather amazing to me. The entire world seems new to me. It was like I woke up from a bad dream and that the 15 plus years with dystonia didn’t exist. I have spent days just looking at things and commenting to myself how different things look because I’m not twisting, posturing or in constant pain etc. Even colors look different. Now I can wear high heels! It might sound ridiculous to you, but DBS has given me the start of a new life – one that I left so long ago and can’t even remember at this point. It’s all about relearning life now.
It is a whole new life now.
Beka Serdans, RN
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews