MAY 2013 | by Darcy Blake | Just a small percentage of Parkinson’s disease patients end up getting DBS, Deep Brain Stimulation. Patients need to pass a discerning battery of tests, because surgery isn’t helpful for everyone.
How could I possibly be one of the few who considers such a drastic treatment? The thought of having holes bored into my skull, probes inserted into my brain, and a metal device the size of half a cell phone embedded in my chest wasn’t even vaguely on my horizon until my options for a comfortable life started dwindling.
I’m a tremor-predominant, left-side-only female diagnosed with Parkinson’s disease in 2008. I’m 62 years old. I’m genetically prone, since my mother has it, as did her mother. After the shock of my first diagnosis by Dr. Edwin Garcia at Kaiser, Redwood City, and a second opinion by Dr. Melanie Brandabur, Clinical Director at The Parkinson’s Institute, I lived in denial for several years, taking Azilect for precaution—the only medication I was able to tolerate without noticeable side effects— but hoping that one day, we’d all find out that it was a big mistake. For about four years, that was fine. Then my tremor became a bit more pronounced, and I tried taking other medication.
The medications made me feel terribly nauseous and dazed. I just could not tolerate them. Over the course of a year, I went on and off a variety of different types and doses. None of them provided me the least bit of relief from the tremor, and all of them made me so sick, I didn’t know if I could continue working, or even functioning. If you are a Parkinson’s patient, you probably already know that everyone reacts differently to the medications. Every person has their own medication tolerance and outcome, so my reaction can not possibly predict your own outcome. Most patients experience results from the meds!
After a year or so, my neurologist, Dr. Garcia took pity on me and he suggested that with my particular display of Parkinson’s—mainly a tremor without other complications plus no positive results with medication—perhaps I’d be a good candidate for DBS.
He referred me to Dr. Rima Ash, Movement Disorder Specialist at Kaiser, San Francisco. She thought I was a good fit for surgery, and I entered Kaiser’s thorough DBS consideration process. Dr. Ash videotaped me walking with and without my meds so that the docs would have a baseline of my natural versus medicated movement.
I also saw Dr. Stacey Rohrer at the Functional Neuroscience Clinic in Kaiser Walnut Creek for a neuropsychological evaluation. I was requested to bring a family member (I brought my daughter) to comment on my every day functioning and I took a battery of multiple choice tests, drew a few drawings, had my memory tested, performed some math calculations, and before I knew it, I was done. The toughest part of the psych test was driving there. My daughter and I—admittedly, neither of us is a navigation whiz—managed to take the wrong turns while equipped with written directions, a GPS and a Smart Phone. But the time we reached the Clinic, we were shaking our heads, and crying with laughter. We had driven ourselves nutty on the way to the psych evaluation!
Once my surgery application was completed with the video, psych evaluation, an MRI, blood work, and a patient history form completed, my case was presented to a team of doctors, clinicians and staff at monthly review meeting at Kaiser, and I received the news that I had been accepted for surgery. That was followed up with an appointment for the surgery, and a meeting with the neurosurgeon, Dr. Mark Sedrak.
I went into the meeting with Dr. Sedrak with a my list of four questions:
- Why does he prefer his method of surgery to other hospital procedures. If you research DBS, you find that each hospital has their own way of doing the surgery.
- How many DBS surgeries has he done?
- How may of his surgeries have been problematic?
- Would I be able to go back to work?
He won my confidence with his description of the Kaiser philosophy behind DBS surgery. “For us, it is all about precision,” said Dr. Sedrak. Their procedure is not the fastest method, and the patient remains semi-awake, but due to those aspects of the surgery, the neurosurgeon is able to take time to utilize several different kinds of surgical crosschecks to make sure that the target in the brain is met with accuracy. He has done hundreds of DBS surgeries, and he has had few problematic cases. He said that although he couldn’t promise that I’d return to work, many of his patients have done it.
During the procedure a very slender metal electrode less than the width of a hair is inserted into a certain part of the brain and connected to a computerized pulse generator, which is implanted under the skin in the chest (similar to a heart pacemaker). The apparatus is beneath the skin. To achieve maximal relief of symptoms, the stimulation can be adjusted during a office visit by a physician [in my case, Dr. Ash] using a programming computer held next to the skin over the pulse generator. You have the choice of a device that has a life expectancy of approximately 9 years and is rechargeable or a device that doesn’t need charging and needs to be replaced in 3 to 5 years.
So this is my decision. I’m young, and I’m not as handicapped as some patients. I work full-time at a job I love and I have a tremor that isn’t helped by medication. I can continue to shake on and deteriorate, or I can take the leap of faith to squeeze out more of a decent quality of life. I’ve decided to take the challenge and I’m in. My surgery is in mid-July. I’ll let you know how it goes.
Oh, the strange sketch? That’s Dr.Sedrak’s office visit sketch [there are a couple other doctor sketches in a previous blog] of the pros of the Kaiser method versus the quick method in the MRI room. Dr. Sedrak believes you lose out on two options of cross-checking if you rely soley on the MRI to hit your target.