Deep Brain Stimulation Revisited
By Beka Serdans, RN, MSN
Many of you may have read about my DBS experiences in the July, 2005 issue of the DySTonia, Inc. newsmagazine. The last 6 months have been uplifting and enlightening; yet, also filled with downtrodden feelings and chaotic emotions about the procedure and programming; thus, I decided to write a follow-up article for you all as an update. First of all, let me make it absolutely clear that DBS is not a cure for any type of dystonia. Second, each type of dystonia responds differently to DBS settings. Third, it is foolish to assume that what another person experiences with DBS is what you will experience with your own settings, programming etc. Fourth, there are no set guidelines for DBS and selection of patient criteria although I have already written to the World Society of Stereostatic and Functional Neurosurgeons ( HYPERLINK “http://www.wssfn.org” www.wssfn.org ) asking them to begin considering establishing patient guidelines and standards of care for DBS.
On Valentine’s Day ( Feb 14th, 2005 ) I returned to work, which proved to be immensely tiring. Absolutely every single Unit wanted to know “How I was ? “. Assignments were heavier than before but conversations only centered on DBS for entire 12 hour shifts. I did not wear a wig, hat or scarf. By now I felt fairly comfortable with my short, short hair. During one shift I almost got “defibbed “by a new colleague who did not know how to use the cardiac debrillator, a machine used to shock a person into regular heart rhythms. By March I felt like a sinking ship. My gait became weaving in nature again. And I couldn’t keep my hands out of my hair -not that there was much hair anyway. I was leaning against walls again. I no longer felt fluid in my movements. They had no beginning, middle or end. Was this the way it was with programming??? Was this so-called DBS success? Adjusting to DBS was not just adjusting to new settings, but it also involved adjusting to a new set of life circumstances – returning to possibly a completely new set of life experiences. But I began recognizing that DBS was a life-changing event emotionally, physically, socially and mentally. I am not too sure if I was as well prepared as I should have been at the start of DBS. There was so much to learn. I was reprogrammed and things were better again for the time being.
In April I needed to be reprogrammed once again. For the first 30 minutes my brain literally tuned my neurosurgeon and his NP out as electrode contacts were changed. As I sat there I realized that I couldn’t talk or understand what the doctor was saying to me. I became trapped in the Land of Aphasia – the inability to speak, comprehend or be understood that is experienced by many stroke victims.
As electrode leads-contacts were altered on the handheld Palm Pilot, I slowly stepped out of this Land, requiring an additional 30 minutes to do so. Quickly my doctor realized what was happening to me by watching my facial expressions. Voltages were increased. My voice came back. My throat no longer felt like it was being stuffed with cotton. I became more mobile; my movements felt more fluid-like. My body grew much more midline. Programming took close to an hour this time, but I walked out of the office as if I was walking on air. To a great degree DBS was still experimental in terms of programming – what worked and what did not work for dystonia. It was still a disease of “trial and error “. Turning aphasic was frightening; yet also surprisingly fascinating as a simple switch of a contact lead in my brain could easily turn the symptoms either on or off. I wanted those contacts off. The next day immense fatigue, headaches and “brain weariness ” wracked my body all day. I skipped my clinical hours as well as school. The headaches were awful. I slept all day. Was this what programming was going to be like??? Aahh- but I could walk with ease in 3 inch heels! No stumbling or falls.
I still did not understand how frequently adjustments or reprogramming of the IPG were in order for me. I felt lost about programming. Voltages, amplitudes, pulse rates and widths. It all seemed like a foreign language in me. I was beginning to feel frustrated and distressed. I also began noticing a pattern. My settings were clearly lasting only 6 to 7 weeks at a time. 20 % of my battery had already been used up. What was it about my dystonia that was making it so hard to ensure success? Or was this happening to others with dystonia as well ? Was I emotionally undone at this point? What was my programmer going to think of me? What about my neurosurgeon? I wasn’t in the mood to see him anyway. I didn’t give a damm — about programming, my neurosurgical team, voltages, DBS , dystonia or about anything at this point. I wasn’t as tough as I was always being portrayed in real life and on television. I was on a new journey. I wasn’t on top of society life either. Life was NEW. And right now I was a real human being with too many chaotic-like emotions. And least of all, I didn’t know what was coming next for me….?
June proved to turn into the worst weeks of living with DBS and the hardware for me personally. On a steaming hot June day – Summer Solstice had arrived- the 23rd-I went in for reprogramming, leaving the office with fairly fluid-like movements, few posturing effects until about 3 hours later when severe headaches and nausea arrived. Love certainly wasn’t in town. (U2 ). I recollect calling my mother and friends, speaking to many; yet no one could understand me on my mobile phone. I don’t know what I told them, but something was definitely wrong with me. I lay awake all night suffering from the “worst headaches of my life “, the nausea only made things worse.
Quickly I learned that I was being over-stimulated – my pacemaker settings had been set too high for me, too high for my neurons .This time I wasn’t absorbing anything that day in the office as the doctor tried to correct the problems. I don’t think I heard a single thing that he said until he ordered me to call him the following day – mind you that would have been a Saturday. He would not take NO for an answer. Again I left the office with new parameters feeling a bit better, but low and behold a few hours later the headaches and nausea began once again. What was happening to me? Maybe I was not a good candidate for DBS? Nausea was a classic sign of over-stimulation. This was turning into a living hell. We decided to begin “washing me out” – turning OFF the pacemaker to let my brain rest from over stimulation effects. After 2 weeks of being turned off and reliving dystonia that was 10 times worse than it had been before DBS, I was turned back on and reset.
All over again my voltages were turned up from 0 to 3.5 within 40 minutes. Within 30 minutes I was experiencing the classic signs of over-stimulation again – headaches and nausea. This was turning into a living hell. My head was swimming as was the nausea again as I sat in the waiting room. Upon Doc’s advice. voltages were decreased back to 3.0. Still HIGH I thought, but then I wasn’t the programmer. I was beginning to feel somewhat at a loss compounded with immense frustration and fear about the entire process. I had little patience. Time was a precious commodity to me
Labor Day was nearing and once more, my body began feeling the effects of dystonia again. Hey, what can I say? I was nearing the magic 6-to 7 week mark again. I wanted to punch a wall. Any wall would do especially mahogany built ones. Meetings at Medtronic were being held to assess device improvements. I solicited some of my other DBS friends for their suggestions and sent a 2 page 600 word document to my neurosurgeon about device improvements. Whether Medtronic engineers would listen was another matter. We all wanted a rechargeable battery. I wanted a new Activa Therapy Controller. The current design felt too clumsy and bulky; I was still afraid to use it. Guess it didn’t feel user-friendly to me. My sisters’ dog was friendlier than the device was!! My symptoms steadily but menacingly returned over a 11 day period in Upstate New York when I was lavishing my time on jet skies and a Lake Summer cottage with my family. A new Super Wal-Mart had opened in the area.
After visiting Wal-Mart for some unknown reason I decided to check my IPG battery – the second time ever – to see if things were working properly. A yellow light appeared indicating that my IPG was in the OFF mode. I became frantic, rereading Medtronic’s Active Therapy Control booklet 100 times hoping that I had missed something. Increasing pain and twisting had been problematic, but I had taken no notice. Even though logic had said that something was wrong, I decided to turn myself back on and needless to say ended up with a power surge erupting in my head followed by my usual over-stimulation side effects of headaches and nausea. At one point I thought I had gone into a cardiac arrhythmia. That was the last thing I needed. My neurosurgeon concluded that Wal-Mart’s’ antitheft detectors had most likely turned me off by formulating a timeline.
Unfortunately, I landed myself in another unexpected unintentional ‘”wash-out” period of 11 days or so with symptoms reaching a high point by Labor Day. This time my symptoms again felt 10 times worse than they had before DBS implantation. What had I gotten myself into? I began a self-analysis of my issues even calling an old mentor of mine, Dr. D., to discuss matters with him. I wanted to rip the device out of my chest wall. I began rereading any outcomes research on the prognosis of the use of DBS and long term implications and complications. I was beginning to worry about the repeated effects of over-stimulation on my neurons. I simply was beginning to worry about the entire process. DBS was no cure for dystonia. Was this the right decision ? DBS was only a Band-Aid. This I clearly understood. Yet frustration levels. I didn’t know what to believe; who to believe, least of all – myself- did I truly have the finesse to be able to live with the hardware, its’ pitfalls and successes on a continuous basis? I wanted to, but was unsure of how to do so. I also felt at a loss of how to troubleshoot the system independently without the help of anyone. As an ICU nurse, I had learned the skills to problem solve patient issues, equipment failures in a matter of minutes. And now I couldn’t even problem solve my own device. However I was beginning to understand that STRESS, lack of sleep and FATIGUE played a role in how well one coped with the hardware. These were 3 factors that I had dealt with rather confidently over the years. Having them chopped like fine tuna lately was scary, demoralizing and unsettling to me.
I had to make some lifestyle changes; the biggest being redefining myself as a person without dystonia and DBS. I had felt trapped by the device for months. Neither was programming going in the right direction. I had last been programmed on the 8th of October with my voltages being increased to 2.6 from 2.4 by my neurosurgeon. Things seemed to be working fairly well until that magic 6 to 7 week mark arrived close to Thanksgiving
wondering how I had arrived to my 1 year post DBS anniversary filled with too many expectations that had not been explained to me prior to the procedure. As Roger had told me I felt raw, awkward and misplaced. I felt dreadfully lonely when on a cool windy Fall day I realized that I was the only tenant who had been implanted with the device in my entire 6 story apartment building; I was the only person in the neighborhood strolling around with the device. There was no one riding the M2, M3, and M4 bus routes with the same device. There was absolutely no one at work with the implanted pacemaker. I was seen as “famous” at work for implanting the device and would receive accolades of “Bek, you look great!”. Yet I felt like I was the only person on the planet with the device.
Roger from the DBSSurgery Yahoo BB had emailed me saying that ” I believe you feel the way you do is because medicine is a very, very visual culture where practitioners are trained to talk about what they observe, not how they feel. Feelings articulated in your milieu have none of the subtleties that you find in your average Souk. There is no spectrum of color on a scale of one to ten that addresses only pain. Your curse and blessing is that you become confused when you look for feelings in a medical library and suppose that such a vast collection of literature must surely contain answers to your dilemmas and feelings Roger had hit the nail on its’ head. I had been looking for answers within text books when they were not there, constantly hoping to find answers to unanswerable questions and feelings.
December came and went as did my 1 year Anniversary date for DBS. It had been a year since the device had been placed. I was still learning about the system. It had its successes, yet pitfalls and failures also existed. One of the most important points to make is those considering DBS should examine themselves as individuals, persons with dystonia, their emotional levels, DBS EXPECTATIONS and coping mechanisms. Today there seems to be no consensus -approved guidelines for the:
Selection of patients who will most likely benefit from the procedure,
Training of personnel or staff who program the stimulators
How, when or where should programming take place,
How to educate patients and physicians about complications, and
How should these complications be managed.
There seems to be a criss-crossing of patients from one Medical Center to another across the United States, at least, in attempting to find the “best” possible neurosurgeons who perform DBS for PD, ET and Dystonia. Roberta Rubin, a skilled programmer said it best: “The thing to emphasize is that even though the surgery is the big dramatic moment, it is only the first step in the DBS journey. Once one is implanted, one is far from being “done”. Sadly, patients give little thought to how and where they will receive this care, even though, really, it requires equal or even greater consideration than the implanting decision. Patients do need to place a little thought into what they’re going to DO when they get home after traveling thousands of miles for the implant. But regardless, they are still traveling miles and searching with little educational back-up. I recognize that Medtronic does have a screened list of implantors and neurologists on their website. I believe to make this list; the providers must have completed Medtronic sponsored training, and have performed a minimum number of cases. So, patients don’t have to fly entirely blind. Yet, unfortunately they are in many cases. ”
According to one of the moderators on the DBS BBs ” There seems to be NO good system, other than word of mouth, to find out who is good and who is not. The only thing I can see that gives one a better chance of success is to go to a large University Teaching Hospital or a specialty clinic such as Cleveland. That is no guarantee either for success.
There are exceptions to this observation of course, and I often lament the fact that the only rating system we have is word of mouth. I cannot in good conscience recommend any facility that I have not gotten at least 4 or 5 positive reports on. I always tell prospective DBS’ers that they should look for a neurosurgeon that has at least 100 procedures to his credit and no more than a 2% complication rate and a 85-90% success rate.”
Unfortunately, we have no way of verifying this. We have no way of ascertaining programmer expertise either. So until the medical establishment, such as the WSSFN, can decide or plan on a patient, friendly way of rating programs, moderators running these BBs will continue to recommend people to the places that give them the best chance of proper lead placement. If your leads are mis-posistioned, you are screwed, pure and simple. No amount of programming can overcome that. Such is life with DBS.
Many will have to live with their surgical failures. Personally I know of too many people who are living with sub-optimal placements. I know the heartbreak and pain associated with this. Good programmers are few and far between. A great additional need is to bring programming up in its stature and recognizing it for the special talents that it requires. However, basic scopes of practice need to be conveyed with patients being educated on these guidelines and individual DBS expectations.
Would I do DBS again looking back 1 year now? I feel ambivalent about that as when the system works I feel well and really have no dystonia symptoms at all (85 % reduced taking in factors like stress etc.) It’s when I’m over stimulated or have other programming issues; I think living without the implantable hardware would be alright as well. DBS is a personal choice for everyone. I made it personal but also very public. ”
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