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

Deep Brain Surgery - Cognitive Testing

A sight to remember  -  Port Angeles, WA.  11/14

After an early morning drive down to Seattle amongst heavy traffic, Carolyn and I sat together in the neurology waiting area patiently listening for my name to be called.  Ahead were 4 hours or so of both cognitive and memory testing intended as part of the selection process for deep brain surgery. Cognitive functions include much of our thinking capabilities.  This means long term memory, working memory or executive memory, creativity, judgement and much more. 

I once regarded this testing as a small step in the path that could lead to deep brain surgery(DBS)but now it seems to be much more.  If the test shows evidence of cognitive decline and memory loss it likely would mean disappointing results from the surgery and probably a worsening of cognitive function.  It also may mean a tough time dealing with and cooperating with "awake" surgery.  It may also mean difficulty dealing with the complexity of the process of deep brain surgery period.

It always feels good to be in Seattle regardless of what brings us down here.  I lived here for a short while in the 70's and it was here that I met Carolyn.  We enjoyed the perfection of physical health and youthful minds that were ours for that short period of our lives. Now I recognize that at least some of that is slipping away but I will always remember that Seattle was our city for a short while.  Lucky me.  The girl I love still sits by my side.

Tucked in my briefcase are 3 sets of paperwork.  The first set of paperwork included questions for me to answer and were intended to obtain an up to date medical history.  The other two sets of questions were identical.  One for me and one for Carolyn.  These sets included questions that were geared to finding out what we both had observed about my current mental status.

The questions included things like:

     Am I still able to manage our finances?

     How many items can I remember to get at the grocery without needing a list?

     Am I still able to drive?

     Do I have trouble remembering details of recent conversations?

     Have you ever used mind altering drugs?
     Do you consume alcohol?

      And so it goes.

My name was called well before my scheduled 8:30 appointment and both Carolyn and I were taken back to a small exam room.  We waited for a few minutes and two attractive women  entered.  The older, in charge of the test, introduced herself and was a doctor.  She also asked permission for the younger, who was a student, to sit in and help with the testing.  I gave her permission to stay.

The doctor sat down in front of a computer terminal and pulled up my medical record for reference.  She then went through the observed mental status questions Carolyn and I had both filled out previously and separately. Her intent appeared to be, to fully understand what was behind our answers and to reconcile any differences.

I think that over the past several years I have noticed more frequent lapses in at least some of the areas questioned. I am not certain what this means.  The brain itself is so complex and is likely influenced by many things currently shaping my life.  Is it Parkinson's?  What about aging or even lack of sleep?  Is it some sinister side effects of the medications that I take?  Each of the drugs I take for Parkinson's is targeted at the brain or central nervous system and probably have some effect. How can these things be sorted out?  Do they need to be sorted out?

After the questions were reconciled and the interviewer believed that she understood the answers we had given, she turned the actual testing portion over to the student.  The Doctor and Carolyn both exited.  

The student began by reading me a list of 7 words and then asked that I repeat them back.  No problem.  She then asked another question or two and then surprised me by asking me to recite what I could remember of the original 7.  Whoops, I must have missed the bit that said I would be asked to repeat those 7 words later.  I had made no mental notes and could not remember even one of the words.  Alas the student giving the test genuinely seemed to like me and was delighted when I was successful and appeared disappointed when I was not. So she gave me a second chance and we  repeated the process with a different list and I once again was asked to repeat what I could remember of the list later. I did better this time around but still found it difficult. 

As the test went on she asked questions to verify that I was oriented to time and place.  I did pretty well but occasionally got hung up a bit.  I did fine with President Barack Obama but could not come up with Joe Biden's last name.  Poor Joe his last name on the tip of my tongue but would not come.  Also I could not think of our Governor's last name either.  What does that mean?  Maybe nothing, I think it is compatible with my age to come up with name blocks. What I think may not matter and so the testing went on. I was shown patterns of geometrical objects and then asked to pick out similar patterns among different objects.  I drew stick diagrams from memory of stick diagrams I had previously seen.  I counted numbers backwards by differing increments.

Things went on and we finished up about lunch time.  The doctor in charge returned and said that it may be a month or so for the results to be ready.  So what then?  There may or may not be a decision for myself and Carolyn to make about deep brain surgery.  They either will pass or fail me to move on toward surgery based on the test results.  For now I am perfectly happy to simply wait.

Shaky in Coupeville