Written February 12, 2023. At Kansas City, Missouri.
I am 70 years old and I have been aware of my Essential Tremors (ET) since grade school. My mother had this condition and it is likely that it has been passed on through me to one or more of my children and grandchildren. I was fortunate to lead a productive life relatively unencumbered by my tremors. My tremors, however, put some limits upon my occupational aspirations. I became an attorney rather than pursue a profession in medicine or science.
My wife, Christine, and I retired in early 2015 giving ourselves over to the pursuit of travel, writing, and time with family.
Over the past eight years my tremors have worsened to the point that in February of 2022 I sought guidance from physicians at the Department of Neurology at the University of Kansas Medical Center. Given my family history and manifest physical symptoms, a confirming diagnosis was immediate. Two pharmaceutical treatment options were tried and ultimately deemed unsuitable; Propranolol because of my slow resting heart rate, and Primidone because of its impact on my sleep and emotions. I was deemed a candidate for a surgical option, either Focused Ultrasound (FU) or Deep Brain Stimulation (DBS). I put treatment decisions on hold taking an “I’ll think about it” attitude. The thought of brain surgery was daunting.
In September and October of 2022, while hiking solo across Portugal and Spain, I became acutely aware of the everyday assistance that my wife had increasingly rendered to me over the years. In an open letter to her on my travelblog I announced that I had come to the decision to undergo DBS surgery. Here is a link to that heartfelt letter:
In December I returned to the University of Kansas Medical Center and in consultation with staff made a final election to undergo the DBS surgical procedure. I was presented with 3 options for the implanted neurostimulator, two by Medtronic and one by Boston Scientific. I selected the Boston Scientific unit because of its programming capabilities and that it is rechargeable.
The University of Kansas Medical Center has three neurosurgeons who perform FS and DBS surgeries. The surgeon with whom I consulted in January is young but very experienced. On average she performs two of these procedures each week. We spoke for nearly an hour, and I felt reassured in having selected her to perform the operation. The plan involves three separate operations. The first scheduled in June will implant an electrode deep into the thalamus of the left hemisphere of my brain which controls my dominant right hand. I will be awake for most of that procedure.
Two weeks later the neurostimulator will be surgically implanted into my chest and attached by wires running from the implanted electrode, under the scalp and skin, down my neck to the stimulator.
Approximately 2 weeks later neurology staff will fine tune the neurostimulator to my particular needs. Later in the year, but as yet unscheduled, a third surgery will implant an electrode in the thalamus of the right hemisphere of my brain thus extending the treatment to my left hand.
An MRI under full anesthesia was conducted in mid-January with and without contrast. The findings were normal and a possible hurdle to surgery was eliminated.
Last week I underwent a detailed neuropsychological examination, again through the University of Kansas Medical Center. Over the course of more than 3 hours I was extensively interviewed by a psychologist and completed a score of tests in areas that included Dementia Screening, Verbal Memory, Attention, Language, Executive Function, Perceptual Function, and Emotional Function. It was exhausting.
It is curious to me the amount of stress that I experienced in the days preceding the neuropsychological examination. What if I was not deemed an appropriate candidate for surgery? What if testing revealed cognitive issues or problems? It occurred to me that this anxiety was unique and never previously experienced by me in the course of any other medical test, examination, or procedure. Tests for cholesterol, blood pressure, cardiovascular health… these define a physical characteristic but do not reach to the core of who one is. The possibility of poor neuropsychological test results not only threatened my decision to go forward with surgery but presented a threat to the definition of who I am. Fortunately, the testing revealed no deficits. I remain a candidate to go forward with DBS surgery.
Reading between the lines, I hope it is evident how fortunate I am to have the support of Christine, my wife of 45 years. She has remained at my side, patiently listening to my concerns and allaying my fears. DBS surgery has an excellent track record and predictive efficacy for tremor reduction of from 60 to 90%. Nevertheless, it is brain surgery, and the risks cannot be ignored.
To this point the most difficult step has been the decision that I reached last October. It is my intention to further update my progress and it is my hope that this will be helpful to others who are contemplating seeking relief from their own Essential Tremors.
Peace Everyone. Pete
PS. I had the opportunity to schedule surgery much earlier in the year. However, Christine and I have planned a six-week journey in England this spring. Beginning in late March we will fly to Manchester England and then train to the town of Carlisle on the west coast just south of the border with Scotland. We will then hike 100 miles from the west coast to the east coast, following the route of Hadrian’s Wall which was erected in the 2nd Century CE by Rome under its Emperor Hadrian.
After sightseeing in cities such as Newcastle, Manchester, and Liverpool, we will proceed to Middlewich England where we will take command of a 62 foot “Narrow Boat” which we will pilot for three weeks upon the canals of England and Wales.
Kansas City friends will join us for part of the canal voyage. This will be a reprise of a similar journey which I detailed in posts on this website:
It is my intention to again regularly post pictures and a running commentary which all are welcome to follow. Pete