How would you like to have a nickel-sized hole drilled in your skull and a wire threaded through your brain from the top of your head to the bottom of your brain, right at the brain stem?  That is where your brain meets your spinal cord.  How would you like to have that procedure done while you are awake?  And then how about having a second surgery just like it five weeks later?

Tonight at our Parkinson’s Disease Support Group meeting, there were a number of people present who have done just that.  They have had the Deep Brain Stimulation Surgery to help control the symptoms of their Parkinson’s Disease.  Their willingness to seek out such a surgery should give us a clue as to just how hard it is to live with Parkinson’s Disease.  The surgery does not cure the disease, it just sets the clock back a while so that the person living with Parkinson’s returns to a quality of life they had before the medications side effects began to outweigh its benefits.  Ideally they gain four to six hours of fairly normal mobility.

A technical description of the surgery can be found on the Kansas University Medical Center’s web site:  “To treat Parkinson’s disease, DBS [Deep Brain Stimulation] delivers controlled electrical stimulation, most commonly through bilaterally implanted electrodes, to targeted cells in the subthalamic nucleus (STN) or internal globus pallidus.”

Tonight Dr. Jules Nazzaro, the Neurosurgeon who does the surgeries talked with the group in detail about how he does the surgery.  He then spent a great deal of time answering questions.  There were some in the group who were considering the surgery, one very anxious to have it done as soon as possible.  One of those present who had the surgery a year ago, when asked how it went, got up and walked around the room.  There was no obvious evidence that he had Parkinson’s.  Before the surgery he fell about a dozen times a day, had a hand tremor, was taking well over twenty pills a day to help give him some mobility.  He is now taking only four pills a day and will soon reduce that to two.  After a time those pills create at least as many symptoms as they control.  Reducing medication is one of the most thrilling of the results of DBS.

There is a rigorous evaluation about three days in length to determine if a patient with Parkinson’s is likely to benefit from the surgery.  First of all, the person needs to have what is called idiopathic Parkinson’s rather than some form of Parkinsonism.  Parkinsonism is some other pathology that produces Parkison’s-like symptoms.  Because of the time spent working in the brain itself, those for whom the disease has progressed to the point that there are memory problems are vulnerable to those problems worsening. There are a variety of criteria for qualifying for the surgery.

Dr. Nazzaro is part of a team including Neurologist, Rajesh Pahwa, who happens to be Mary Ann’s Neurologist.  Dr. Pahwa is the one who determines whether or not a person is a good candidate for the surgery.  He prescribes and manages the complex regimen of medications that control Parkinson’s.  Dr. Pahwa is a master at finding just the right formula of pills to match each Parkinson’s paticnt’s unique needs.  When the medication options have finally been exhausted, but the patient is still healthy enough to go through it, Dr. Pahwa finally recommends considering the surgery.

It was a number of years ago that he suggested the surgery for Mary Ann.  She was just not interested.  At that time, I had mixed feelings about it.  I wanted her to have it, but I was not willing to try to influence her decision.  For one thing, selfishly, I didn’t want to have any responsibility for the decision if something went wrong.  As is obvious, there are risks to the surgery.  A second consideration is the importance of the attitude of the patient undergoing the surgery.  The patient her/himself has to make the decision and be committed to the recovery.

Actually, the two surgeries putting the lead deep into the brain are two of four surgeries.  There are two additional outpatient surgeries to thread a wire from each of the two leads under the skin into the chest area and insert the two generators.  The generators are turned on and off by a magnet.  The generators stimulate  specific areas of cells, actually to reduce their activity.  The missing dopamine that causes the Parkinson’s is what usually controls those areas.  One of those areas produces tremors if not properly controlled and the other produces immobility if not properly controlled. At least that is my understanding after attending so many Parkinson’s Symposia.

As an aside, Michael J. Fox has had what is called a Pallidotomy.  In that surgery a permanent lesion is made on the Globus Pallidus to reduce its activity and help control the movement difficulties that come with Parkinson’s.  One advantage of the DBS surgery is that it can be reversed.  There is no permanent damage to the brain should some more effective treatment come along (or a cure!).  If I understand correctly, controlling the two areas has a better track record for reducing symptoms and the need for medication.

At this point in the progression of the disease, along with the other major health problems that have joined the assault on Mary Ann’s body, she is no longer a good candidate for the DBS.

The surgery is recommended now earlier rather than later in the disease process.  It is a quality of life issue.  I have often heard people say that they finally had their back surgery or knee or hip replacement surgery when the pain was worse than their apprehensions about the surgery. The same is so for DBS surgery.  When finally the symptoms of the Parkinson’s itself and the side effects of the medication are  frustrating enough, the DBS surgery offers hope for a better quality of life.  There are not guarantees that come with the surgery, but the track record is very good.

University of Kansas Medical Center did the first DBS surgery, and Drs. Pahwa and Nazzaro are among the very best in the nation.  For those who are suffering the effects of Parkinson’s Disease, if the time is right, DBS surgery offers hope.

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