Your Stories

"Brain Sounds"

© Mona Schwartz 2004-2005

To read Chapter One, click here.

Chapter Two

PREPARATION

Before we left for home that fateful day, we met another of Dr. D.’s patients, someone who had undergone DBS/STN surgery three months earlier. April was a perky, bird-like little woman, approximately fifteen years older than I, and walked with a cane. She, too, was accompanied by a friend. April wore a colorfully printed fabric turban, much like the ones worn by women undergoing chemotherapy. I had the impression that she had a wardrobe of them, choosing colors and prints to coordinate with her outfits. Animated and forthcoming, she spoke with a soft British accent. Dr. D. found an empty room for us, where we held an impromptu meeting out of his earshot. April said she had fallen only three times since the surgery, which seemed three times too much to me, but she was apparently pleased. Free of tremors, rigidity, shambling gait, and other overt signs of Parkinson’s, she appeared “normal.” That tallied to the plus side, in my mind.

Also, since she knew she had a balance issue, she could take some preventative measures, such as using her cane.

Overall, she was extremely pleased with the results of her surgery and said, “I have no reservations about recommending it to others. My major complaint is the amount of time it is taking to regrow my hair.”

Her second complaint was the timing of the surgery. It started at 6 AM, went through lunch, and she was hungry by the time she was out of the recovery room at 3:30. After discovering the hospital kitchen was closed, she reported agitating for a between-meal snack. She suggested the hospital cafeteria offer pizza when it was not serving full meals. On that note, her friend had a suggestion for surviving hospital food that proved useful later.

“You should familiarize yourselves with local grocery stores and restaurants, collect menus, and be prepared to call for delivery orders.”

Although we never did order in, the suggestion gave us thought—or should I say, “food for thought”? Sorry for that.

Needless to say, Aileen was on the Internet as soon as she dropped me at home. We gathered some promising information to supplement what Dr. D. had told us. There were, I concluded, six reasons for seriously considering DBS/STN surgery:

1. There are no permanent lesions created; therefore, no brain tissue is destroyed as in the thalamotomy and pallidotomy surgeries. Thus, the surgery is potentially reversible. If it turned out to be a mistake, there would be no permanent damage to my brain-hopefully.

2. The surgery is designed to reduce Parkinson’s symptoms as well as side effects of the medication in one fell swoop. Whereas, with the pallidotomy, thalamotomy, and thalamic DBS, usually the surgeon must choose between the reliefs.

3. If the surgery were successful, the effects (i.e., tremor reduction, dyskinesia reduction, etc.) appear to be easily—almost infinitely—adjustable.

4. The subthalamic nucleus is an area deep within the brain which controls aspects of normal movement. It is an area too dangerous to be lesioned. However, this area can now be manipulated with DBS/STN, without creating a lesion.

5. If, someday during my lifetime, researchers were to discover a cure for Parkinson’s, this surgery, being reversible, would not prevent me from partaking of that cure.

6. Doctors believe the effects of the surgery do not significantly fade with time. Actually, there is some suggestion of improvement over time.

Thus, preliminary research was encouraging, although I was stunned that I was actually considering brain surgery, which seemed drastic. Although the information we read looked promising, there had to be a down-side to the surgery. I counted four:

1. As with all surgery, something could go wrong and I could die— the ultimate in immobility. However, death, although final, seemed not an unacceptable alternative, considering the quality of the life I had and could expect. I didn’t, by any means, have a death wish, but as an alternative to severe dyskinesias, loss of balance, pervasive loss of control over my body and my life, it seemed an acceptable result of a brain surgery gone awry. It didn’t seem as tragic as, for instance, what had happened to a colleague of mine a few years before. She had a simple appendectomy, developed a blood clot that traveled to her brain and she died two days after her surgery. Encouragingly, the mortality rate for DBS/STN at my hospital, at the time, was only one percent. Although that wasn’t encouraging for the family of the single patient who hemorrhaged to death, I was assured that it was a very good statistic.

2. The surgery could cause a stroke. I concluded that a stroke would be adding immobility to immobility, but I decided the potential for improvement worth the gamble; besides, I thought if something went wrong, I would most likely go for the dramatic gesture and lose my cognitive powers from the stroke or die during the surgery, and, either way, quality of life would cease to be my problem.

3. There was a danger of infection from, or damage to, the electronics the surgeon planned to insert. That seemed like a minor issue, compared to a hemorrhage or a clot. Also, it was remediable in most cases.

4. Another downside was the specter of recurring surgeries every three to five years. It was touted as minor ambulatory surgery necessary to replace the batteries in the electronics. However, it required a cessation (short-lived but still unwelcome) of my proposed return to mobility as well as the loss of control implied by surgery of any kind. This surgery was a minor issue in the larger picture, to be sure, but a consideration nonetheless. As it turned out, it was not a deal breaker.

I felt I really had no choice, all things considered, but to opt for surgery at that point. Actually, I embraced the idea.

The next step was an appointment with the neurosurgeon, Dr. A. He put to rest notions of arrogant, ego-driven surgeons. He is a quiet, almost shy man who gives full attention to other speakers, an especially important characteristic when speaking with Parkinson’s patients who frequently have impaired speech and/or reduced volume. He doesn’t give up impatiently and turn to the patient’s companion as an alternative. So many people, doctors included, talk across the patient, taking the easy way out, but thereby minimizing the input of the person with Parkinson’s.

My neurological/neurosurgical team has an average age of forty. (I wonder when my doctors all became younger than I.) Dr. A., sandy- haired and disarmingly boyish, is an avid baseball fan. He displays in his office historic baseball memorabilia, and a team uniform hangs behind the door. During my surgery, whenever there was a lull in conversation, he would introduce a baseball topic. I confess this made me feel left out since I know very little, actually, “nothing,” about baseball.

Dr. A. believes in a fully informed, fully prepared patient. Accompanied by a computer presentation, he talked through, in detail, the steps of the surgery with us. Aileen took eight pages of hand- written notes.

Dr. A. said, “You are the prototypical candidate for surgery. The ideal candidate is under seventy-five years old with advanced Parkinson’s disease, has a good response to the medication but experiences severe dyskinesias from it. The surgery would not improve your response to the medication, but can alleviate dyskinesias.”

The surgery involves implanting electrodes, one each for the left and/or right sides of the body, as needed. Most often the surgery is bilateral, as it would be for me. The electrodes would be implanted in my brain while I was awake. Sometime later, not necessarily the same day, in a second procedure, small boxes-neurostimulators—would be implanted in my chest. I would be anesthetized for this surgery. The neurostimulators are small, approximately two inches square by one-half inch thick. There is one for each electrode. Leads, barely a hair’s width, encased in narrow plastic tubing, are run from each electrode to each neurostimulator. They run under my skin over the skull, behind the ears, down the neck, into my chest. After the boxes and leads are connected, and activated, they transmit electrical impulses to the electrodes implanted in my brain.

About two weeks after the brain surgery, the neurostimulators are activated. Settings for the impulses are established by the doctors who use a physician’s programmer, a hand-held device, slightly larger than the neurostimulator. To activate the neurostimulators, the physician’s programmer would simply be held against the site of each implant in my chest. The programmer is attached by a cord, like a coiled phone cord, to a briefcase packed with electronics which control and record the various settings. Each neurostimulator can have individual settings to compensate for variations between the left and right sides of my body. At the time, no one knew why, or exactly how, the stimulation worked, even though in most cases it did— exceedingly well. As time passes, doctors learn more about the “why” DBS works.

Dr. A. continued with the following time-line: “The initial procedure takes approximately six hours. First, at 6:00 A.M., the physician’s assistant will shave your head. At approximately 7:30 A.M., I will position the stereotactic frame, which is a large, heavy metal cube with open sides. The frame surrounds your head, resting on your shoulders. It is then screwed into your ears, immobilizing your head.You will then be moved to radiology for a closed MRI, which brings the timing to approximately 9:00 A.M. I plan reference coordinates [whatever they are] from the MRI.”

Continuing, he said, “I will administer a local anesthesia before making two incisions, one on either side of your head behind the hair line. I am careful to stay within the hairline so that scar tissue will be hidden when the hair grows back.” A nice cosmetic concern. This is bilateral surgery he was describing; he makes one incision for unilateral surgery. The incisions are pain-free because of the local anesthesia. Because the brain feels no pain, the rest of the surgery requires no anesthesia and I remain awake.

The surgeon drills a hole into my skull at the site of one incision. The hole is fourteen millimeters in diameter, approximately the size of a nickel. Drilling takes about thirty seconds.

Then the neurophysiologist inserts his tiny microphone into the hole and turns on his computer which transmits amplified sounds of individual brain cells. Listening for variations in sound, the surgeon and neurophysiologist plot the location for the electrode. It usually takes two to three attempts (each about thirty minutes) to find the target location in the subthalamic nucleus. The surgeon is then ready to implant the electrode (one and one-third millimeters in diameter) and run test simulations. A simulation is conducted by attaching an external neurostimulator to the electrode, then turning it on for a short while. That is the final test to ascertain that the surgeon has found the best location for the electrode. Then he secures it in place. Finally, he closes. By then it can be 12:00 or 1:00 P.M. In a bilateral surgery, the surgeon repeats the procedure for the second side (which takes him to 3:00 or 3:30 P.M.).

He requests a post-op MRI to confirm the placement of the electrodes. After the second MRI, the stereotactic frame is removed, and I will be transferred to the recovery room for a few hours, then to step-down, a specialized neurological unit, a half-way station where I would be under close observation for post-surgical status, especially signs of confusion. Step-down is an important stage between the recovery room and a regular hospital room.

Once I had decided to proceed with the operation, Dr. A. requested that I schedule a brain MRI he could study, appointments with the other members of his surgical team, and finally, pre-surgical appointments with him and with Dr. D.

Since I had a recent open MRI, taken for another reason, but suitable for Dr. A.’ s purposes, the next step in my search for mobility was an appointment with Dr. K., the neuropsychologist on the team. Her assignment was to test for signs of dementia, a condition which can occur with Parkinson’s. Dementia, or “confusion” as Dr. A. called it, making it sound less ominous, can develop as a side effect of the surgery. It can be temporary, diminishing as the swelling of the brain—a normal result of the surgery—diminishes. Or it can take longer to disappear or, rarely, can become permanent. Most seriously, surgery- induced dementia can worsen a pre-existing dementia. Consequently, surgeons need to know the mental status of a potential candidate for surgery. I had concerns about the reliability of my short term memory. I noticed that I was not so much forgetful as slower in information retrieval than I used to be. I assumed Dr. K. primarily would be testing for short term memory, and I wanted to go “in training.” Not knowing how I could improve retrieval speed specifically, I decided any activity to sharpen mental skills would have to do. So, during medication “on” time, instead of my other usual activities, I took up word games and resumed doing the New York Times Sunday Crossword Puzzle, yet another pleasure I had reluctantly sacrificed to Parkinson’s. I played along with “Jeopardy” and “Wheel of Fortune.” As I had expected, my preparation had little, if anything, to do with the actual test, but I felt I was exercising my mind and re-sharpening my mental skills, so it wasn’t a waste of time or effort.

Dr. K.’s office was as low-key as she. Barely larger than a cubicle with a door, her office was filled with standard issue furniture: desk, three chairs, files. She had personalized it with a few pieces of Asian art. The plants on the window sill formed an organic barrier between her sanctuary inside and the constant bustle of traffic outside. The effect was very Fung Shui, designed to reduce stress. A delicate, soft-spoken woman, about my size, she remained calm and compassionate throughout my barely controlled stress at being tested. Her battery of tests ran for about one hour. They ranged from asking me, “What is the name and address of the medical center where we are today?” to more challenging tasks.

For another of the activities, she required me to repeat, from memory, random numbers in spoken lists of ever increasing length and complexity. The culmination was a list of thirteen random numbers that I was asked to recall and recite in backwards order. I am numerically challenged, and, despite the calm atmosphere, typical overachiever that I am, I worried about that task. Aileen, who was sitting next to me, is mathematically gifted, and later told me that she tried to send mental images of the lists to me, but, to our mutual amazement, I did well on my own.

Another test involved looking at a page printed all over with the names of three colors. Each word was printed in one of the three colors, but not necessarily the corresponding one. For example, the word “orange” might be printed in green. I was to point to all occurrences of the name of one of the colors, ignoring its actual printed color. And so the hour progressed, tiring for me, but with basically do-able activities.

Apparently I passed because at the end of the hour Dr. K. said, “I will recommend you for surgery,” adding, “I wish you well. I have seen some wonderful improvements in patients who had the DBS/STN surgery”. At this point I needed all the good wishes and success stories I could gather.

I usually don’t equivocate on a decision, and once it is made, it is final—no looking back. I had made the decision to have the surgery; however, I was experiencing apprehension—call it pre-surgery anxiety. At unpredictable moments, I would blurt out to anyone who would listen, usually that was Aileen,

“They are going to do what?!
And I’m going to let them?!”

***********

Aileen handled this stage, which lasted for three months, until the surgery, amazingly well. She neither encouraged nor discouraged me. As a matter of fact, she was quite laconic. She simply reiterated that she supported my decision, whatever it was. Sometime after the surgery, Aileen confided her real feelings: At the time, she felt it was my only choice, but was surprised that I was so strong in my desire for it. She felt the details, as outlined by Dr. A., too gruesome to contemplate. But, later, seeing the result, she was ecstatic for me.

***********

I continued with the next step, an appointment with the physician’s assistant on the surgical team. His assignment was to establish for the record the exact status of my mobility. To this end, he told me not to take my medications prior to the appointment, but to bring them with me. He wore surgical scrubs to our appointment, having come straight from the operating room. His appearance made the surgery suddenly real for me. Until then, it had been an idea, an abstraction, but here in front of me was someone whose pastel scrubs were a link between surgery and my world. I experienced a new connection between pre-surgical anxiety and the knowledge that I was approaching my goal.

Friendly and talkative, his conversation made it clear that he was versed in his specialty. He videotaped my performance on the usual tests of mobility, including finger, wrist and arm, foot and leg movements, balance and walking.

Then I took my medication, went through my usual “kick-in” contortions, and, when those stopped for a while, I performed the mobility tests again, showing remarkable improvement, especially in hand and finger dexterity. He wanted to videotape me walking while medicated, but, by then the dyskinesias were so disabling that I was unable to manage.

Finally, he described his primary role during the surgery, which was as an ombudsman, a go-between for the patient and the doctors, an essential role since I would be awake but possibly not heard because of my reduced speech volume. Knowing that he would be present during surgery was reassuring.

On the same day I met another member of the team, Dr. S., the neurophysiologist. Wearing blue scrubs, accented with an orange drawstring cinching his pants, he looked young enough to be a college student, maybe a graduate student. Only he was not brash and know-it-all like the stereotypical PhD candidate. Despite his self-effacing, almost “aw, shucks,” manner, he was introduced as one of a handful of experts in the country. When I asked him the distinction between a neurologist and a neurophysiologist, Dr. S. explained, “A neurologist describes what is occurring; a neurophysiologist describes how it is happening.” He was the doctor who, with the assistance of his computer, interpreted the sounds projected by the intercranial microphone during surgery. I was fascinated by the concept of “music” of the brain cells. Not only was I pleased to meet him, but I said a silent prayer to a number of deities on behalf of his hearing.

My final appointment with members of the surgical team was with Dr. T., a neurologist specializing in motor disorders. He is a serious man with a serious job and a surprising, irreverent sense of humor. Whenever I visualize him, I see him dressed in shades of brown. He is the life sized teddy bear prize at the carnival. He is your best friend and confidant, even huggable when needed.

Like the others on the team, he is an unusually good listener. Dr. T. summarized what I had heard from the others; however, his emphasis was post-surgical:

I would have to wait about fifteen days after implantation of the neurostimulators to have the devices turned on. This was to give me some healing time for reduction of brain swelling. After they were turned on, I could expect weekly appointments for approximately one month until Doctors T. and S. found acceptable initial settings. On each of the electrodes are four contact points, any combination of which can be activated and programmed for a wide range of frequency and intensity settings. Finding the appropriate settings is largely a process of trial, error, and experience. It can take up to three months to refine the settings, once they have been established. It is not uncommon, throughout the first year, for a patient to experience continued improvement in his symptoms at the same setting. The average patient is able to reduce his dose of medicine by half, and will experience reduced, or no, side-effects. Some patients experience changes in speech, which often can be improved by stimulation adjustments. There is also specialized speech therapy available.

Dr. T. suggested that I consider post surgical physical therapy for gait improvement because my muscles, frozen into a Parkinson’s state for so long, would be released and likely require retraining. Like a good teacher, he illustrated his points with anecdotes as memory aids. Who could forget his admonition to take it easy for at least one month after surgery, followed by the story of the ambitious patient who felt strong enough to do home repairs while standing on a ladder, only to come tumbling down, irreparably damaging his electronics?

Then I returned to Dr. A. for a final visit before surgery. He reviewed the potentially positive results, as well as the possible negatives. He elaborated on the two percent risk of infection which is generally restricted to the neurostimulator area. If that occurs, the neurostimulator is removed, the infection cleared, and the device re- implanted. Usually the electrodes remain in place for this procedure and no further brain surgery is required.

Dr. A. emphasized the risk of post-surgical confusion, usually transient, but which can be permanent. Placing both electrodes during the same surgery increases the chance of confusion but, taking into account my particular medical history, he had decided to implant both in a single surgery, rather than face the risks of a second procedure. By now, any questions I had were answered by Dr. A., or a member of his team. We had a meeting with Dr. D. for a final assessment of my current mobility—or lack of it.

Surgery was already scheduled and I was still saying, “They’re going to do what?
And I’m going to let them.”

Mona Schwartz is a former English professor, director of a college-level writing program, and author of a textbook on writing. A Parkinson’s patient for 20 years, Mona had DBS-STN surgery in November 2001. She lives with her geriatric cat, Cleo.

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