DBS (Deep Brain Stimulation): Helping You Decide

My DBS Story to Help You Decide

Part One:

Flashback: 13 years ago. I am living in Costa Rica and experiencing unexplained symptoms. A physical exam by a PCP yielded a referral to a neurologist. After a few taps with a rubber mallet, a penlight in my eyes, watching me draw a spiraling circle and then take a few steps, he announced, “Usted tiene la enfermedad de Parkinson.” My junior high school Spanish did not equip me with the requisite skill set to ask any meaningful questions of the good doctor even if I had possessed a shred of mindspace at that moment. After presenting me with a sample bottle of Sinemet, he instructed me to call his office for refills and to make an appointment to see him in six months when I checked out with the cashier. Numb, I fought back tears. I knew precious little about PD at that point but I knew my life had changed and not for the better. We drove home in silence. I had no idea what had just occurred.

Flashback: 12 years ago. My symptoms worsened. The classic tremors never appeared but my walking and balance deteriorated, exacerbated by living where sidewalks and smooth surfaces were uncommon. I searched, to no avail, for information or to find someone who could help me understand what was happening to me. My Sinemet regimen kept increasing as did the daily nausea, apathy and withdrawal. Slipping into depression, I began to isolate myself from everyone and everything and spent my days sleeping in a darkened room. I wasn’t me any more.

Flashback: 10 years ago. New symptoms of painful stiffness and slowness of any body movement appeared. I was transferred to a second Costa Rican neurologist who wondered out loud if I truly had PD or something else, yet he continued treatment by making a large increase in the Sinemet regimen and adding a new drug, called Mirapex, which is an agonist. My symptoms worsen and the depression and isolation deepen. Side effects of the agonist appear and relationships with my family and friends began to spin out of control.

Flashback: 8 years ago. A dangerous moment of truth deep in the Costa Rican jungle affords me the courage to make some serious mental, physical and lifestyle changes to attack the beast and rebuild my life, my family and my future. I return to the USA in hopes of finding a top notch neurologist with a new perspective on my PD. One appointment with my third neurologist crushes that hope as he offers nothing new. Frustrated yet determined, I begin to find some resources myself and learn how to become my own lead care team member to explore any and all the options available. My symptoms stabilize with further increases in carbidopa/levodopa. Mirapex is discontinued due to side effects and I experience significant withdrawal effects from the agonist.

Flashback: 4 years ago. During my twice a year visit with my new neurologist (the fourth since being “diagnosed”) his outstanding physician’s assistant, Connie, had listened attentively to my list of complaints about my PD. “The carbidopa/levodopa relief does not last as long as before and I felt some increase in symptoms” I told her. She explained by introducing the terms “on” and “off”. While these words were not new to me, they took on a whole new meaning. “On” was when the meds worked. “Off” is when they didn't. “What you are experiencing,” Connie told me, “is the diminishing effectiveness of the carbidopa/levodopa and the emergence of side effects to the long term use of carbidopa/levodopa. We need to increase yet again the daily amount of carbidopa/levodopa and shorten your dosage intervals down to four hours." “OK” I said, “Guess I can take more pills every day. I already take so many, what does it matter?” Connie went on, “Many times there comes a day when the carbidopa/levodopa not only doesn't work so well anymore, it just doesn't work at all. It becomes less and less effective and its side effects keep increasing. I think you may get to that point some day, but when you might get there, is impossible to say.”

Out of left field, Connie sat down and looked straight into my eyes. “We have something you might want to take a look at. It’s called DBS or Deep Brain Stimulation.” I had already heard enough. Just combining the words deep, brain and stimulation didn't sound like anything I was up for. “Let me give you a brief rundown.” Connie continued, “Basically, what happens is one or two electric leads are placed inside your brain and are then connected to a unit not unlike your smartphone, which is implanted in your chest, similar to a pacemaker.” “Wait a second Connie, let me ask you a question," I blurted. “Did you say that wires would be put inside my brain?” She smiled knowingly and said, “Yes that's what I said.” In amazement, I responded, ``Well, how do they get those wires into my brain?” She said “Well, one or two holes would be drilled in your skull and the surgeon would fish them down to the correct location where they would be connected to a pacemaker type device implanted somewhere below your collarbone.” Now, I had really heard enough. We finished our visit and my wife and I began our drive home. At nearly the same moment, we both laughed and said, “Did you hear that brain surgery stuff?” My wife went on to wonder if there was any possibility of programming my brain to listen to her fully and be present once and a while. I didn't think about it much until a few weeks later when I found the brochure and began to read. The content and photos surely ended any idea I may have ever had about considering this procedure. Turns out that many times this brain surgery is done while you are awake! “OK”, I thought, “I'll just keep cramming carbidopa/levodopa in me so that I can continue to work through my PD symptoms and I'll be fine. Everything’s OK.”

Flashback: A year ago. What happened in the interim was just as predicted by Connie. Levodopa/carbidopa, my two old feel good buddies, had pretty much run their useful course. My off time periods began to become more often and were more lengthy. I would spend the better part of a day “off.” Frequently, I couldn't walk, my cognitive functions varied unpredictably. My voice was lowered to a whisper and I began to occasionally aspirate food. Somewhere along the line, I counted how many of these carbidopa/levodopa capsules I had swallowed over the years and found the number had topped 33,000. Also, something new had popped up. I was now having an uncontrolled movement that I never experienced before. It felt as if I was doing the Twist in slow motion, as my entire body moved in erratic circles. No longer able to stand erect, my knees began to feel weak as if they could buckle. Devastating cramps in my feet, calves and hamstrings came on suddenly while my hands contorted into T-Rex fists. No amount of strength could bend my fingers back into place. They were stuck. Freezing incidents became commonplace and falls began to take their toll. My gait shortened more and more while festination and shuffling were frequent. Scared out of my wits, I remembered DBS. A visit to the University of Google informed me of the many advances in DBS technology and a growing number of successful cases. It became real to me and the slightest twinge of a DBS possibility snuck into my head. Connie was my next stop and we had a lengthy telemedicine appointment. “I have a couple of things to tell you, I began, “One, I was ready to learn about that DBS thing. Number two was that the neurologist, who was her boss, was not a guy I ever wanted to drill holes in my skull. Truth be told, I had never met anyone in my life who I would trust with a drill anywhere near my skull. Much less with the intention of drilling right through my skull into whatever is my sorry excuse for a brain. I flashed on a scene from Ghostbusters where Egan and Vinkman discussed Egan’s desire to drill a hole in his own head for research purposes. Luckily, cooler heads prevailed and Connie broke my trance with her always reassuring voice. “I hear you. I will give you a list of some Movement Disorder Specialists who have had great outcomes with DBS.” I scoured her list and ticked off some MDS’s that looked promising. By that time, I had also become quite active in the PD Community and asked around. One name kept coming up and the same name was also on Connie’s list. I made a phone call that changed my life and moved to my fifth, current and last PD doc.

Flashback: Six months ago. Dr. O, a Movement Disorder Specialist and his team evaluated and analyzed me from stem to stern along with a number of other specialists. After making an initial finding that I was a good candidate for DBS, an even more rigorous set of tests and evaluations were performed over a two day period. They included a speech and swallowing specialist, a nutritionist, an occupational therapist, a physical therapist, a social worker, a memory specialist, a psychiatrist, a neurosurgeon, and my own neurologist. A few days later, the team met without me and candidly discussed my case. After coming up with a thorough plan of preparation, treatment, equipment, recovery, rehabilitation and further steps, they carefully spelled out the entire plan until I understood every sentence. All of the possible gains were laid on the table but there were no guarantees. Side by side, all possible risks, some of them mind numbing, were laid out. I took a few days to talk to some important people in my life and then set a date for DBS surgery five months out. 180 degrees of change in my attitude regarding the wizardry of DBS.

Flash to: Last Week. Days away from having the surgery performed, I am both excited and anxious. Keeping my expectations realistic, my fear in check and my mind, body and spirit up for the task at hand. I busy myself with preparation and look up an old friend named meditation.

Flash to: Today. My wife is driving us to the hospital as I smile at a beautiful sun and feel its warmth on my face. Our conversation is light and full of humor and love. I have called the kids and our close friends. All the necessary pre-op was completed yesterday. We have arrived a bit early and we have a moment to talk and take a deep breath. I am ready. I am most grateful to have the opportunity for DBS as millions of PD sufferers do not have access to even carbidopa/levodopa. Stay tuned and I'll post Part 2. Be grateful and keep on rockin’!!

Coming Soon Part Two: The DBS Experience