I was 54 years old, and had Parkinson's Disease for at least 7 years prior to the operation. My first symptoms were a series of incidents of biceps tendinitis in my arms, resulting in unsuccessful treatments involving immobilizing my left arm with a sling for several weeks, then in a cast for 6 weeks. After coming out of the cast, I displayed tremors in my left arm, which the Orthopedic doctor thought were muscle atrophy. Physical therapy was given, but with no great improvement. I also showed muscular weaknesses and stiffness in my left arm and leg, and tended to favor my right (dominant) side, including driving my car with my right hand only.
After about two years, my tremors increased and I was sitting in a movie theater with my wife with my left hand on her chair, and went into uncontrolled tremors. I had a co-worker with Parkinson’s, and my other co-workers had commented on how my walking pattern in the office hallway was similar to his. I was referred by my family doctor to a Neurologist, Dr. Larry Blum of Annapolis, who diagnosed Parkinson’s after ruling out other possibilities through CAT Scan, EEG and other tests. He prescribed Sinemet (L-Dopa), which didn’t help much at first, then aded Eldepryl (brand name of Deprynyl or Selegiline HCL), which reduced my tremors immediately.
My doses of Sinemet were gradually increased over a year or two, until I started to have stomach problems, when I was switched to Sinemet CR (Controlled Release), which eliminated the stomach problems. Later Artane was tried with very bad results, causing a sudden drop in blood pressure and extreme dizziness. Permax was given for about 9 months in gradually increasing doses, but mainly caused me excessive drowsiness, greatly disabling me in my work and at the end making me unable to drive my car, plus lowering my blood pressure. I was put on Florinef to raise the blood pressure, and taken off Permax entirely.
My body still had stiffness in the left arm and leg, and my off periods (drug ineffectiveness times) gradually increased, as had diskinesias (erratic movements). In 1996, I became a patient of Dr. Stephen Reich at Johns Hopkins University Hospital Outpatient center, after being referred by Dr. Blum for assistance in adjusting my medications. I knew Dr. Reich from the Maryland Young Parkinson’s Support Group which meets at Hopkins. He runs the office that coordinates most of the American Parkinson’s Disease Association (APDA) support groups in the state.
Several presentations were made at various support groups and symposiums I atttended in the previous couple of years about new operations being performed, specifically the Pallidotomy and Thallamotomy and the controversial Fetal Cell Tissue Implants. Dr. Reich wrote a paper about the Pallidotomy which I read in a support group newsletter. There had also been several national and local documentary television shows showing patients undergoing the Pallidotomy with good results.
Both Dr. Blum and Dr. Reich thought that I might be a candidate for the Pallidotomy. Dr. Reich referred me to Dr. Lenz, the neurosurgeon who performs the operations, and Dr. Lenz accepted me as a candidate for the operation in January. I was scheduled initially for an operation in August, but had my name placed on the waiting list for an earlier operation in the event of a cancellation, after I took early retirement from my job in April.
I had the operation on May 14, 1997. I entered the hospital on Tuesday, May 13,1997. Two weeks prior to that, I had an MRI scan of the brain there. On the 13th, I had blood tests, a chest x-ray and an interview and battery of tests by a psychologist. I was then admitted to the adult neurological ward (the 8th floor of the Myer Building).
At 7 am on Wednesday, I was taken to the neurological radiology area for installation of the titanium framework on my head. Initially, hair was shaved from the right central part of my scalp to clear the area for the later incision. The framework was an open metal helmet that was attached to the skull with six pointed thumbscrews. The pain was initially bad when the screws were tightened, then local anesthetic (novicaine-type) injections were made under the points. I recommended afterwards that an initial numbing spray be used on the skin before tightening the screws, in order to minimize pain and anxiety.
After the framework was in place, I was put in a CAT Scan machine, and the brain scanned to calibrate the location of the framework relative to the skull. Then I was taken to the Operating Room at about 8:30. No general anesthesia was used. An initial shot of local anesthetic was put in the scalp, then an incision was made. There was no pain after the injection.
A little while later, the surgeon said I would “hear a crunch”. First I heard the drill motor start, then a loud crunching sound through my skull as he cut the hole in the skull. That was probably the most potentially anxiety-arousing moment, but it came and went in an instant, and there were no problems thereafter.
During the next 3 hours, from 8:30 to 11:30 approximately, the doctors probed my brain with a detector probe that picked up abnormal electrical activity. The probe was connected to a loudspeaker, and the activity sounded like geiger counter clicks or radio static. The doctors mapped the locations of activity in x,y,z 3-dimensional coordinates from the settings of the control arms on the side of the framework.
At each location, Dr. Lenz proceeded to move my arms and legs and flex my joints (elbows, shoulder, fingers, knees, feet) looking for changes in the electrical activity to make connections between the areas of the brain and specific parts of the body. He would also have me squeeze his fingers and push and pull his hand, finger coordination exercises and facial expressions, the standard neurological exam protocol which we patients are frequently administered in normal exams. Four critical areas had to be fully mapped out before the treatment could be done.
Once the four areas were identified, the detector probe was replaced with an electrical heating element (being a ham radio operator, I think of it as a kind of soldering gun) that was placed in those locations again, and electricity used to heat it up warm enough to destroy the tissues at those points (called creating lesions).
As each area was “zapped”, Dr. Lenz tested my symptoms and they suddenly ceased (especially the stiffness on my left side). Prior to the procedure, I could only do 7 finger taps with my left thumb and first finger, now I can do an unlimited number, the same as my right side.
As the Operating Room team completed the procedure, I thanked them for the operation and told them I felt good. I spent about an hour in the Recovery Room, being given IV liquids with an antibiotic and Decadron ( a drug that prevents swelling of the brain). I was later given Decadron pills to take for 5 days after the operation.
I was full of energy after the operation and since, because of the elimination of the loss of energy from my previous muscular tension. I was also hungry after returning to the Neurology ward, and there was no food for me by name until noon Thursday, so I scrounged unclaimed food trays for previous patients on the ward who had departed or extra trays they sent. The Neurology ward is the last to get fed, and I didn’t eat until almost 7 PM Wednesday, and 9 AM Thursday morning. I am used to eating at 6 AM, so I was famished most of the time.
I had two unfortunate roommates in my room in the 3 days, both of whom had general anesthesia and thus had to wait over 24 hours to start eating again, while their intestines started operating again after the effects of the anesthesia. They couldn’t believe that I was up walking around and eating right after brain surgery.
After returning home, my wife considered me a younger man. The week prior to the surgery, I had erroneously been given a Senior Citizens Discount at two restaurants, because of my “old man’s” shuffling walk and appearance. Kate said I acted 10 years younger than my age after the operation.
I had previously tended to get exhausted driving the 2 hours from Annapolis to Salisbury to pick up my son at college. I drove there a few weeks after the operation, and felt relaxed and untired after the drive. I had also temporarily had my drivers license revoked for failing the response time test at the DMV, and after the operation I felt in good control of the car.
I play the tuba in the Bay Winds band in Annapolis, and previously had muscle cramps and exhaustion from stiffly grasping my instrument with my left hand and arm. After the operation, I could hold the instrument loosely, and concentrate my energy in playing the horn, and I was playing faster and more accurately. I was elected President of the Bay Winds in July of 1997 and held that position for 2 years. Only recently (in 2000), I have begun to have new muscular problems in my lip and the right side of my body, but I am still playing regularly in the band, and had my picture published in the June 30, 2000 edition of the Washington Post Weekend Magazine issue dedicated to community bands.
I took two semesters of computer science courses at the Anne Arundel Community College in 1997-98, with a 4.0 GPA. Then I switched to creative writing and took a series of workshops and courses in 1998-2000, concentrating on autobiographical writing and poetry. In 1999 and the first half of 2000 I had 5 poems and a memoir magazine article published. I have some swallowing and speech problems, gradually saw new symptoms develop on the other (right) side of my body, and am still taking medications (Sinemet CR and Amantadine). All in all, the change has been dramatic. The operation is not for everyone, but for me it has been miraculous.
Last Updated: 7/14/2000
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