Working Miracles (article in Advance for Nurses, Oct. 3, 2005)

Technology and teamwork are perfectly matched at the California Neuroscience Institute at St. John's Regional Medical Center
by Stephanie M. Adamow

The California Neuroscience Institute (CNI) at St. John's Regional Medical Center in Oxnard is giving people back lives they have lost to movement disorders. Limbs that were once frozen become useful again, and uncontrollable shaking is calmed with the administration of state-of-the-art technology and a little extra emotional support. Led by Clinical Supervisor Roberta Rubin, RN, CNOR, RNFA, individuals with Parkinson's and other movement disorders are re-entering the world with a newfound freedom from their diseases.

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The Framework: The CNI is the second such facility for parent company Catholic Healthcare West. The first is located at St. Joseph's Hospital in Phoenix. Before the Oxnard institute was opened in January 2000, St. John's was heavily focused on diagnosing and treating neurological disorders. Additionally, the hospital had been declared a Parkinson's center of excellence from the National Parkinson's Foundation based on the presence of a movement disorders specialist and that it was starting to perform surgical interventions for Parkinson's disease, explained Kimberly Seidman, institute director and director of marketing and program development.
In addition to the director of research, Oleg Kopyov, PhD, and two neurosurgeons, Rubin was instrumental in developing the CNI program. She also personally attends to each patient from admittance to discharge. "One of the things I saw a need for in a program like this is a true perioperative approach to patient care," Rubin said. "Often in a surgical situation, patients encounter several nurses in the course of their stay. What I wanted was for one nurse to follow the patient through the whole procedure. This is what makes the program at St. John's unique."

Deep Brain Stimulation: Combined with that uniqueness is cutting-edge technology. Deep brain stimulation (DBS) is a breakthrough procedure that helps ease symptoms resulting from Parkinson's. Other disorders treated include dystonias, disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures; and essential tremor, the most common form of tremor or rhythmic shaking of a body part. These disorders not only affect daily living activities, but are the cause of social stigma and alienation. DBS is a surgical procedure used to treat these movement disorders. It involves implanting a battery-operated medical device, a neurostimulator, to deliver electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor, according to the National Institute of Neurological Disorders and Stroke. The staff at St. John's uses MRI technology and a mapping system to evaluate the structures of the brain to locate where symptoms are generated and, hence, where to place the electrodes for stimulation. "Calling it stimulation is a little bit of a misnomer," Rubin admitted. "It works similarly to spinal cord stimulation, which overstimulates the spinal nerves so they cannot process the message of pain. It sets up noise so pain doesn't get through. The structures in movement disorders we are stimulating are overactive and that is what we learn when we do the mapping in the OR; we hear overactivity and that is how we know we are in the right place. "The stimulation overstimulates the structure so that it shuts it down with noise," Rubin added. "But that shutdown needs to be precisely placed. You don't want to shut down the portion of motor impulses you need to function." Typically, most patients need two stimulators, one on each side of the brain if they have symptoms on both sides of the body. Rubin prepares the patient by providing education and videotaping them to document the movement disorder. A patient evaluation is conducted to rate patients' motor functions. This helps quantify the level of improvement following stimulator implantation.

Interactive Procedure: Patients need to undergo more than one procedure before completion ‹ the surgery to implant the lead or electrode and another for the neurostimulator, which is usually implanted under the skin near the collarbone. During the procedure to implant the electrodes, patients are awake as they are required to participate and communicate with Rubin. "During the DBS surgery, I monitor patients' responses to the microelectrode stimulation by passive range of motion to evoke hyperactive kinesthetic motor neurons," explained Rubin. "This helps us identify the appropriate 5-6 mm area of the brain to be stimulated. Also, because I am on the nonsterile side of the drape, I can monitor them for signs of adverse effects, such as eye deviation or facial grimacing. These have been rare in incidence, but because we can identify them immediately, we are able to recalculate for optimal positioning. "After the target for stimulation is confirmed, I test the patients' motor functions with the electrode activated at increasing voltages. They perform simple motor tasks such as opening and closing their hands and flexing and bending their knees. "Lastly, my job at the patient's side is chief hand-holder and reassurance officer!" added Rubin. "I explain every step of the procedure to the patient. [Patients] are fully awake for the monitoring and listening very carefully to every word being said. I try to tell them the kinds of things I would want to hear if I was lying there. What will happen next? Will it hurt? How much longer? Is everything going OK?" As the clinical surgical technologist in the OR during the procedures, RJ Craig-Young, CST, knows firsthand the challenges and triumphs these patients experience. One of the things she says is the most difficult is remembering the patient is awake and listening. "They need to know everyone is on their side and there to help," she confirmed. "That really makes a difference."

In the ICU: After the DBS procedure, patients are transferred to the ICU until they can be discharged the next morning. Here, they encounter Golda Gordon, RN,C. She explained that even though these patients are monitored with the same level of attention as other ICU patients, she is specifically in tune with any change in their level of consciousness or extremities' strength, anything neurologically related. Most of the patients she sees have Parkinson's, but she has cared for others with tardive dyskinesia or tremors. "I think it is more of a mental challenge for patients because of their symptoms, and we need to be there for them emotionally," she said. Sometimes it is difficult for these patients to express themselves, Gordon said. So it takes a lot of probing and questioning to find the root of the problem if they cannot verbalize it. Rubin never misses the opportunity to check in with her patients in the ICU and before they are discharged, fulfilling her mission to be a constant figure throughout the patient's stay. And Rubin is the one Gordon calls with questions or if any problems occur while caring for the DBS patients. Rubin also has created a program for rehabilitation. Some patients with Parkinson's, for example, have trouble learning to move again if they have had the disease for many years. This program helps them rejoin the world after successful surgery, Seidman explained.

Programming Phase: While patients only need to have the stimulator implanted once, its programming may need tweaking now and again. "Even though the device controls symptoms, the underlying disease continues," explained Seidman. "Whether it is progressing or not, Parkinson's seems to change from one day to the next." Rubin is responsible for locating these changes and reprogramming the stimulators. This is similar to programming a pacemaker, she said. It has to be an ongoing process throughout a patient's lifetime. And each patient is different. "That's what makes it challenging and fun," Rubin told ADVANCE. "Each patient is different and each side of the body is different. Making these changes has to be individually based. I have to examine each patient and make individual assessment and treatment plans." The programming is generally completed 3 days after the implant, but this is done on a very low level. After 2 weeks, she will perform a full programming and then see patients every 2 weeks for the first few months for fine-tuning. Rubin uses a handheld microprocessor that communicates with the stimulation generator, allowing her to make changes in electrode contact selection, frequency rate, pulse width and voltage levels. This can be completed in any combination based on the individual's responses, symptoms and stimulation needs. "The possibilities are calculated at well over 4,000, so it takes a lot of creative problem solving to customize it for each patient," Rubin said.

Transformation Complete: Patients' transformations are quite a sight to see for all staff members. The positive effects resulting from DBS surgery are visible almost immediately. "It really is a miracle," commented Craig-Young. "To see them go from non-movement to movement brings tears to your eyes. It is wonderful to see that these people can have a normal life after not having one for so long." "To restore mobility and function to someone who thought it was lost to them forever is an incredible gift," Rubin echoed. "Tears, laughter and hugs are frequently flowing through the halls of the CNI!" And patients don't soon forget the treatment they received during their stays, Gordon informed. Former patients often seek her out on return visits to explain progress they have made. "I have so much joy caring for these patients," she said. "I give them the extra emotional care because I know they have been through a lot. They are looking for some hope and comfort."

Stephanie M. Adamow is assistant editor at ADVANCE.

 

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