Preparing for Deep Brain Surgery at The Swedish Neuroscience Institute

We sat waiting patiently while my Parkinson's doctor, a neurologist and movement disorder specialist reviewed the results of my tests that had been ordered and completed as a part of the requirements leading up to Deep brain surgery or DBS.  DBS is the surgical process where wire leads are threaded through the skull and then are placed deep, to nearly the center of the brain.  Once turned on the stimulation provided at the end of the leads provides a blocking action on cellular output from the targeted area and can have a remarkable effect on certain Parkinson's symptoms.  The tests I have been undergoing are required to rule out existing conditions that are contraindicated by DBS.  Primarily we are speaking of dementia and "poor response to drug therapy"  The doctor had these results assembled in a folder including: cognitive and memory tests,  my off of drugs movement testing, my on drug movement testing.  She also had the conclusions drawn from each of these tests by those who had worked with me when they were given.  I already knew that each of these professionals had advanced a green light for surgery.  Now my neurologist was ready to share her conclusions with my wife, Carolyn and Myself.  Her recommendation would be based on their notes, and those of  her own and others from nearly 5 years of my being seen for symptoms of Parkinson's and now approaching 4 years after diagnosis.

Carolyn and I have a very high regard for my neurologist and we believed that she had not only applied her considerable expertise to my care, additionally she also honestly cared about me.  Both of us were ready to put a lot of confidence in the conclusions she had arrived at and what she might say.  She started with, "I still believe that you are an excellent candidate for DBS."  No surprise, this was an opinion she had been repeating since nearly the beginning.  It was much more impactful now that I stood on the threshold of having such surgery.  She let that soak in for a minute or so and then went on to discuss what we might or might not expect from the surgery.  The effect of surgery is primarily on the motor or movement symptoms of Parkinson's.  I have a variant of Parkinson's known as "tremor predominate" which means that my primary symptom of tremors could be expected to respond well to deep brain stimulation.  The underlying cause of Parkinson's and other symptoms of the disease itself will continue.  She went on to say that "you may expect the surgery results to be as good as your best "on" drug therapy."  In other words at full drug dose and when the disease is responding optimally to drugs, it is similar to DBS surgery results.  The difference is that I could take fewer drugs and would not be as heavily burdened by the side effects of drug therapy. The roller coaster of drug therapy can be effectively smoothed since DBS stimulation is active and operating all the time, 24/7.  Unfortunately some drug therapy usually remains after surgery but the quantity is likely reduced and occasionally may be eliminated.

It became time for questions and I quizzed her "I am doing pretty well with drug treatment and I have read that tremor predominant Parkinson's often moves slowly.  So why would I want to undertake such a major procedure?"  She explained that in observing me for the past several years and seeing my drug list grow that she could not say my disease was slow moving.  She went on to say that she had some patients who were progressing more slowly and some who were progressing more rapidly.  I was average and at this rate I could expect significant disability within 5 years.  Her intent I do not believe was to frighten me but to put me in touch with reality.  The truth is that Parkinson's is a relentless disease from which there are no remissions.

We finished with discussing which receptor site in the center of my brain would best be targeted for the goals I have with the surgery.  The neuro surgeon at the Swedish Neuro Science Institute in Seattle, would place the stimulator leads in one of two sites.  The process must be done twice.  Once for each side of the brain since both sides of my body are affected.  knowing that I desired very much to reduce drugs as much as is possible she suggested that the surgeon be instructed to place the lead in an area called STN or sub thalamic nucleus.  At this location excellent results have been achieved after surgery with drug reduction.

Though she is not a surgeon, many details related to surgery and the post operative tuning of the implanted leads are all under my neurologists care.  Amazingly she is even willing to alter her schedule to assure her availability for follow up or for tuning appointments. It does take several months of tuning the output of the stimulator to achieve optimum results.

After returning home, I placed a call to the nurse practitioner at Swedish, simply stating that I want to move ahead with surgery.  She called back the following day and sounded delighted with our decision.  She reinforced that my youthfulness and excellent overall health profile helped boost my status as an excellent candidate for the surgery.  Final scheduling of the surgery will depend on the surgeon and the staff at Swedish Neuro Science institute.  I am expecting an early or late March date.

Still Shaky in Coupeville