Dec 19, 2013 | by Darcy Blake | This is an edited compilation of blogs I have written on my DBS experience presented as a speech at the Kaiser RWC TPMG Managers Offsite and Holiday Luncheon.
I’m a left-side-only, tremor-predominant, female diagnosed with Parkinson’s Disease in 2008 at age 58 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 hoped that one day, we’d find out that it was a mistake.
Then my tremor became more pronounced, and I tried taking other medication which made me feel terribly nauseous and dazed. Most patients experience effective results from the meds, but I began to have dystonia – where my foot curled inward and dragged due to the medications I was taking. Because of my limp, I had to cancel my summer vacation.
After a year or so, 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 said, “Think of me as the sous-chef for DBS. I get you all prepped and then, you go off to the neurosurgeon and movement disorder specialist.”
He referred me to Dr. Rima Ash, Movement Disorder Specialist at Kaiser, San Francisco. She videotaped me walking with and without my meds so that the docs would have a baseline of my natural versus medicated movement. Then I entered Kaiser’s thorough DBS consideration process.
I 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 daily functioning.
Once my surgery application was complete with the video, psych evaluation, an MRI, blood work, and a patient history form, my case was presented to a team of doctors, clinicians and staff at a monthly review meeting at Kaiser, and I received the news that I had been accepted for surgery.
That was followed up with a meeting with the neurosurgeon, Dr. Mark Sedrak, who won my confidence with his description of the Kaiser philosophy behind DBS surgery. “For us, it is all about precision,” he said. Our 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 use different kinds of surgical crosschecks to make sure that the target in the brain is met with accuracy. 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 pacemaker). To achieve maximal relief of symptoms, the stimulation can be adjusted during an office visit by a doctor using a programming computer.
I decided, 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 could continue to shake on and deteriorate, or I could take the leap of faith to squeeze out a decent quality of life. I decided to take the challenge. My surgery was in mid-July.
It seems as though Kaiser must employ experienced flight controllers to book their surgery appointments because the five appointments that the nurses lined up for my single pre-op day were so perfectly synchronized, I flowed from one appointment to another without a hitch. SFO should take note, because Kaiser knows how to work a schedule like clockwork!
I started the day in San Francisco where I saw Dr. Rima Ash. She would program the implanted neurostimulator device three weeks after my surgery.
Then I saw Ivan Bernstein in Redwood City. He works in Functional Neurosurgery and Pain Management. He and Diana Bruce are physician assistants. They assist the surgeon during surgery with mapping, and planning the DBS. They are also personally into humanitarian volunteering. Diana spent the year of 2011 in Iraq and Ivan is just back from a trip to Vietnam as part of a neuro-surgery team. Their duties at Kaiser are along the lines of wedding planners making sure that every detail of the surgery is planned to perfection so that the “marriage” between patient and neurostimulator goes smoothly.
I met with Dr. Quesada, who practices physical medicine and rehabilitation. I had to move along so I would not be late for some blood work and further testing by Dr. Alexander Yu, an internist who works closely with the surgeon to determine if the patient can safely proceed with anesthesia.
When I stopped by an office to sign some paper work, Dr. Sedrak, the neurosurgeon popped in to say hi. The next stop was my MRI appointment, and whom should I run into on the way in, but Dr. Eric Sabelman, the bioengineer.
How the Surgery Went
Now I’m on the other side of DBS and looking back, and you may be asking how was it? I think that the worst part for me was the feeling of nausea due to the anesthesia throughout the operation.
My scalp was numbed with anesthetic, and then Kaiser used a stereotactic frame, part of which is the “halo” that was placed on my head. Fortunately, I had plenty of nurses’ hands to hold, and the halo was on before I knew it. At the beginning of surgery, a kind female nurse whispered that the team had waited until the males were out of the room before they inserted the catheter into my bladder. To them, thank you. And then several hours of feeling woozy started.
Three weeks later, Dr. Ash turned on the electrical impulse and I left thinking my tremor was over, for four glorious days during which time I even posted a video to illustrate the victory of my surgical outcome. Four days later, I was awakened by my shaking hand.
What happened? How was it that the DBS stopped cold-turkey? Dr. Ash said it was still very early in programming, so she was not surprised.
I emailed Dr. Sedrak who said, “The effects of programming and changes in the brain can take up to 6 months. These are hundreds of thousands of possible combinations in programming. Time is the biggest factor here.”
You can drive yourself crazy researching the internet with reports like, Why Doesn’t Deep Brain Stimulation Surgery Always Work? where a neurologist carefully tells patients, “I say, ‘It can work like a miracle, but it doesn’t all the time. Be realistic.” That was a very stressful time because I wanted that euphoria, “steady as a rock,” to return.
I went through a whirlwind of emails with Dr. Sabelman, who tried to patiently explain his neurogenius technical knowledge of the human brain to me, and I’m a very non-right side of the brain kind of person. “Voltage and frequency are not the same,” he said. It might be that the cells that gave the immediate good result were right next to the DBS electrode, and they “didn’t like” the higher voltage – so they reverted to being overactive, or maybe they died and some other less-effective cells replaced them in the circuit. This was just a guess, since there is no way to look inside and see what is really happening.”
The “stimulation” frequency for reducing tremor is actually down-regulating neuron firing rates, not increasing them,” he said. So we should call it “Deep Brain Inhibition” instead of stimulation, but that name will never catch on,” said Dr. Sabelman (I could tell this was his passion.) “Inhibition” sounds better than “stimulation” for PD patients like myself who have had enough stimulation for a lifetime. I turned my thoughts to What Not to Wear.
What Not to Wear
“You could try it,” said my doctors rather reluctantly, when I asked them about wearing my magnetic jewelry after Deep Brain Stimulation. “But if it turns off your stimulator, you’ll have the answer.” The fear of messing with my DBS hardware did it for me. I packed up my favorite bracelets with magnet clasps and gave them to my daughter.
For three weeks, if I went out, I covered my head with clean scarves. When the Kaiser nurse was taking out my stitches, she lamented that sometimes guys will come in with a baseball hat that they have lived in 24/7 for 10 years or so without washing it, and the grit and grime is like a petri-dish ready for discovery.
“Oh, those Sunglasses,” as Ivan Bernstein said to me. That was after I told him about the wrenching headaches I was getting while wearing sunglasses. Due to the swelling of DBS patients’ heads, sunglasses are very uncomfortable. A broad brimmed hat makes it possible for you to not wear sunglasses, which makes it much more comfortable when you are out with your walking sticks building back your stamina!
While waiting for my third visit to Dr. Ash, I looked for a word that describes wanting something that you know is possible to achieve, but you have no idea of how to get from A to B to obtain it. Then I found this quote:
“We must discover the distinction between hope and expectation.”
Ivan Illich, sociologist
I like this quote because I think there is a huge psychological difference between hope, and expectation. Hope proposes that “events will turn out for the best,” with faith, and optimism to take you to your goal. Expectation, on the other hand is a strong belief that something will happen or be the case in the future. Expectation, founded on one’s ego, leaves little room for interaction between the doer and the emotional journey to get between the two points. It is the interaction from here to there that Kaiser caregivers participate in so well. They are willing to make that journey with their patients not always knowing where the road may take them.
“Learn not to expect too much,” said my friend. “I’ve found that sometimes when things get tough, I need to take a look at my expectations. If you can back off a little from what you think you must have, the situation doesn’t seem as bad, and life can improve rather miraculously.”
I thought about what he said, and I decided to look for ways to get quality of life with what I had to work with at this moment. I picked up my walking sticks, went out walking, and left the frustration of expectation behind.
After six unsuccessful programs, almost imperceptibly over the next week, there was gradual improvement to the point where I could return to work just seven weeks after surgery.
Success at Last
On my second day at work, I realized that my hand had stopped shaking. Not wanting to re-experience disappointment, I disregarded it at first. But, as time passed, and people noticed it, I realized my surgery was a success!
What’s the Kaiser part of this? A special family atmosphere exists in Neurosurgery at Kaiser such as when Dr. Stacey Rohrer from Walnut Creek told me that if she had DBS, she would choose Dr. Sedrak do the surgery in a nano-second.
The personal touch is such a comfort such as when the nurse whispered that she waited until the males were out of the surgery room to insert the catheder. I love that Dr. Sedrak took the time to say hello.
I appreciate the atmosphere of team-work where you get the feeling that everyone appreciates each other and applauds what their co-workers are doing, such as when Dr. Edwin Garcia told me that he is like a “sous-chef” for the neurosurgeon, when Ivan Bernstein told me with such pride how he is visiting Vietnam to work with a special neurosurgical team.
Dr. Sedrak was the first doctor to write an article on DBS for my blog, parkinsonswomen.com. Eric Sabelman laboriously corrected several of my DBS blogs, sending several Word docs to me, kindly pointing out my medical inaccuracies. Dr. Ash saw me 24 hours after her wedding!
The connection between patients and doctors that Kaiser offers through their online service has been a brilliant step forward in confirming the importance of relationship. I value the commitment it takes for the doctors to facilitate this.
When I returned to the Bay Area in 2007 after working in Southern California for a while, I asked a doctor couple I know —a rheumatologist and a pediatrician—which medical insurance I should go with–Kaiser or Blue Cross. My friends, both in private practice treating Blue Cross patients, looked uncomfortably at each other and said, “Kaiser. It is the hospital of the future.” You know, they are right. Kaiser is the future of healthcare.
After recovery, I returned to working full-time as a Director of Communications at Menlo College in October. I continued to work on the parkinsonswomen.com blog. I’ve watched with pride as our audience has soared to 225 on our Parkinson’s Women Support Facebook page; I co-chaired an event that raised $8,000 for the Parkinson’s Institute and was featured in an article about PWS on inMenlo.com, and I’m beginning volunteer work on a new event for the National Parkinson Foundation. I guess I survived surgery ok.
Thank You So Much
I couldn’t end this without thanking the team at Kaiser Permanente for the incredible extra-special care they gave me. From neurosurgeon Dr. Mark Sedrak, to the functional neurosurgery/pain management team of Ivan Bernstein, and Diana Bruce, the bioengineer Dr. Eric Sabelman, Movement Disorder Specialist Rima Ash, and all of the nurses and workers there, it was an enormous first class effort for which I will be eternally grateful.
Here’s video proof: http://www.youtube.com/watch?v=KCWcTrKon6s