During the latter part of 2009, I decided to pursue an appointment at one of the top neurological hospitals in the U.S. I was not dissatisfied with the University of Colorado Hospital (UCH), but thought it was a good idea to pursue another expert opinion. I had a number of options where friends or family lived in the vicinity of the target hospital. Barrow Neurolgical Institute (also home to the Muhammad Ali Parkinson Clinic) in Phoenix offered to make an appointment with me and I accepted (I have friends who live in Sun City West which is in the area). I was happy to learn that I would be meeting with Dr. Abraham Lieberman, an internationally recognized PD expert, former Medical Director at the National Parkinson Foundation (NPF), and Director of both Barrows and the Ali Clinic.
I met with Dr. Lieberman during November of 2009. During his in-depth examination, he commented that I would be an excellent candidate for deep brain stimulation (DBS) surgery. He mentioned that DBS was highly successful in addressing tremor which was clearly my most troublesome motor symptom. He recommended trying some different medications to see if there might be a non-surgical solution. He also told me that he had met the team at UCH and that he felt they were an excellent choice if I decided to pursue DBS surgery.
When I returned to Denver, I spoke to my movement disorder specialist, Dr. Benzi Kluger, about my visit at Barrow. He agreed that I would be a good DBS candidate if a medication could not be found that solved the problem (he knew my case well enough that he did not think this was likely). After trying a number of medications that didn't help, I made an appointment for a DBS evaluation.
The first step in the evaluation was a neuropsychological exam which I took in December 2009. This involves a series of mental exercises and a motor function test and takes a few hours to complete. The tests are actually quite interesting and end up providing a snapshot of the current functioning of many parts of your brain. As I understand it, they do not do DBS in cases where there is evidence of dementia. I was approved based on this test from a neuropsychological standpoint.
The next step in the process, which took place in April 2010 was an in-depth PD exam by a movement disorder specialist while taking sinemet. The next day I was examined after having been off sinemet overnight. Unified Parkinson Disease Rating Scale (UPDRS) scores are compared both on and off sinemet. If functioning is not significantly worse off sinemet, approval is not likely. I was also evaluated by a voice specialist to determine if I was likely to need voice therapy. Finally, I met with the neurosurgeon, Dr. Steven Ojemann, who made sure that I was aware of the risks and benefits associated with DBS. After some discussion, we agreed that the logical "target" for my DBS would be the thalamus which he described as the best target for tremor (the target for general PD symptoms is usually the subthalamic nucleus). About a week later, I was told that I had been approved. I could have scheduled the surgery at that time, but had to wait for insurance reasons. Needless to say, insurance coverage was an important aspect of this decision. We set a tentative surgery date for March 2011.
In hindsight, it was good that we waited because it gave us a chance to do our homework and get additional feedback. For example, in July 2010 my wife and I traveled to Bethesda, MD to participate in a National Institute of Health/National Institute of Neurolgical Disease & Stroke (NIH/NINDS) clinical research program for development of a PD patient database. While there I learned a good deal more about the disease and some things specific to me that I did not know (like my sense of smell was significantly dimininished). I also took the opportunity to ask about DBS and whether there was something else on the horizon research-wise that I should wait for. They spoke highly of UCH, agreed with the thalamus target based on their exam, and told me that DBS was my best option for the forseeable future. This added to our confidence that we were on the right track.
Another benefit of waiting was that we started attending a DBS support group in our area (the Bionic Brigade) organized by two wonderful ladies who have both had DBS, Kate Kelsall and Valerie Graham. This gave us the opportunity to learn more about DBS surgery and life after DBS directly from patients. The bottom line is that, for PD patients, there is a window of opportunity for most when they can take advantage of procedures that will improve their quality of life. That window is finite. While I didn't hear anyone say that DBS is perfect, I also did not hear anyone say that they would not do it over again. My wife and I were armed with enough information to decide to take the plunge.
March 2011 finally arrived. I was to have three surgeries; the first two would involve implantation of the leads in both sides of my brain into the thalamus. Extensions would be connected to the leads and be placed under my scalp where they would later be connected to the neurostimulator which would be implanted in my upper left chest (the third surgery).
I was given antibiotic ointment that was applied with a Q-tip in the nose for a week prior to surgery as well as a special shampoo for my hair. This was to minimize the risk of one the most common DBS issues which is infecton. Catscans were taken before and after each of the first two surgeries. The first helped determine the "trajectory" for implantation of the lead. The second was to ensure that the placement was correct and that there were no apparent problems. The first two surgeries were inpatient and included an overnight stay in the neurology ICU where I would be observed and helped with any problems. One of the least pleasant memories of the surgery was the placement of the "halo" that would stabilize my head during surgery. A local anesthetic was used to minimize discomfort, but the pressure from the halo was uncomfortable. The halo was rendered immobile with four screws that were attached to my skull (there was no pain with this, but the idea was gruesome). Without this device, DBS would not be possible as it holds the head completely still during surgery. I was sedated for surgery, but it had been explained to me that I would be conscious for part of the surgery in order to give feedback that would help ensure proper placement of the leads.
The primary players in the operating room were the neurosurgeon (Dr. Ojemann), the movement disorder specialist (Dr. Klepitskaya), and the Medtronic rep (Nicole Garcetti). I was aware that all three were involved in the discussions and decision-making, though the neurosurgeon made the final call when necessary. For each of these first two surgeries, Dr. Klepitskaya had me write my name, draw a straight line, and draw a circular pattern both before and during surgery. It was amazing to see how steady I was in the OR compared to my preliminary drawings, When Dr. Klepitskaya took the "before and afters" out to the waiting room to show my wife, she was astounded. I was also asked whether I felt anything unusual, like numbness or tingling, when adjustments were made to the lead placement. There was no pain associated with this (the brain does not feel pain). I was not awake at the beginning of the operation, so thankfully missed the drilling of the holes in my skull.
The first two surgeries were a week apart. The third, which was an outpatient procedure for implantation of the neurostimulator (about the size of a small cell phone), was two weeks later. I was under general anesthesia for this one. The extensions run from the leads to a point in the back of the head (under the scalp) where they are connected and a single extension runs behind my left ear down my neck and across my collarbone where it connects to the neurostimulator.
The neurostimulator is not "turned on" for about two weeks following the last surgery to allow initial healing to take place. At that time, I had my first "programming" session with Dr. Julie Berk, who adjusts the settings of the neurostimulator to provide the maximum benefit with the least side effects. In my case, if the settings are too strong, it affects my face and jaw muscles and makes it difficult to speak clearly. Over the course of four visits, we were able to fine tune the settings. I was pleased that my "programmer" (rather like a remote control) has four programs within which I can adjust the stimulation level up or down on both sides of my brain.
Now it is September and the memory of these surgeries is fading, but the benefit is not. I would always urge anyone considering DBS surgery to ask a lot of questions. At the end of the day, it is up to you to decide whether DBS is right for you. My feeling was that I wanted to take advantage of a procedure that would improve my quality of life if the benefits outweighed the risks. I am glad that I had DBS and would do it again.
For more information on DBS, visit the Medronic patient information site (http://www.medtronic.com/health-consumers/index.htm?cmpid=patients_global_nav) or the Parkinson Alliance DBS site (http://www.dbs-stn.org/).