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The Zen of DBS Programming

By Roberta Rubin, RN, CNOR, RNFA, California Neuroscience Institute

Is it black magic, or simple physics? The answer is both. Programming is 30% physical science, 30% listening and observing, 30% clinical movement disorders training, and 10% creative thinking. Here are answers to some frequently asked questions. What do amplitude, pulse width and pulse rate mean?
If you picture in your mind an EKG waveform, the amplitude is the height of the spike, the pulse width is the length of time it stays at the top of the spike, and the pulse rate is the number of spikes per second.
How do you decide what parameters to set? There are pretty well established starting parameters that researchers agree are effective for a lot of people with similar symptoms. But one size does definitely NOT fit all. Most programmers will start with a conventional setting, and then take it in whatever direction the patient needs to go based on responses and side effects.
What are unipolar and bipolar? To create an electrical current you need a cathode and an anode (remember high school physics?) A negative and a positive. The generator battery pack in your chest is referred to as the "case". The electrode in your brain has 4 contacts 0 1 2 3. The deepest one is 0, and the top one is 3. Unipolar means that the case is positive and one or two or all of the contacts are negative. For example, case + 0-. This creates the widest current spread. For some, unipolar is too strong, and bipolar is a better option. This takes case out of the equation, and focuses the current between two contact; for example, 0- 1+, or 1- 2+. You can reverse the cathode and anode for an even weaker current in an extremely sensitive patient.
How much time is programming supposed to take? Programming takes as long as it takes to achieve the optimal setting. This may not be achieved in one visit. Sometimes it is a "slam dunk" on the first try. For most, however, it is an ongoing process. It's important that the programming provider know your symptoms intimately and do a practical assessment of them at each visit. If you play the guitar, bring the guitar. If you have trouble typing, or writing whatever, test these activities throughout the process. Always take your medication after programming and stay put until you are "on" to make sure you do not get disabling dyskinesia from the combination.
Why does the effect seem to fade out? You leave the office feeling great, and one or two days later, or even later the same day, you're right back where you started. This is a tough one, and frustrating for all. But remember with your medication, how long it took to find the right dosage and combination. It's a process of trial and error and patience. Having a response at all means you are very close, you just need a little more, or a little less of one or two or all of the parameters. Keep working at it, and don't give up.
Roberta's Ramblings The most successful patients are the ones who "partner" on their programming. It's an interactive process, and the more you bring, the more you'll go home with. My most diligent patients keep "diaries" we create together for them charting every three hours for five days, meds, meals, and rating scales of 1-5, walking, tremor, dyskinesia, feeling of well being, sleep, on and off time. This can be created on a spreadsheet or by hand. This is great information for planning med changes and programming changes. Your neurologist will love this too. Also, before going to programming, list your goals for that session. Is your left leg dragging? Head feels fuzzy? Speech slurred? Communicate these needs before starting. Call once in a while when you're feeling great. This makes us dance down the halls with joy!
Don't forget to hug your programmer!
Images: 1st, Roberta testing a patient in the OR; 2nd, Roberta programming a patient.
Roberta Rubin, RN, CNOR, RNFA Roberta has been working in the field of Neurosurgery for 22 years, and specializing in Movement Disorders surgery for the past 13 years. She has been on staff of some of the most progressive neurosurgical centers in the country, including New England Medical Center, Barrow Neurological Institute and Cedars Sinai Medical Center, and has been instrumental in creating movement disorder surgery programs at each of them. Currently, Roberta is clinical supervisor and head nurse at California Neuroscience Institute, at St. John's Regional Medical Center in Oxnard, CA. At this center, she has created a unique "perioperative" approach to DBS patient care, where one nurse is assigned to each patient for the whole experienc before, during, and after surgery. This allows for a high level of communication and bonding between patient and nurse, and results in a greater outcome satisfaction for both patient and nurse.

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