The Long Dead End Road to Surgery

Last week two references to Deep Brain Stimulation were made to me on the same day, prompting me to revisit a piece I started to write over a year ago and couldn't complete. My emotions on this difficult experience were still too raw at the time to allow a measured writing. Perhaps now I can do the subject justice.

Deep Brain Stimulation (DBS) has been fairly successful, not in curing the disease, but by increasing mobility and allowing the patient to function on fewer Parkinson's medications. It is not a static procedure; it allows long-term post-surgical adjustments to be made as the patient continues to degenerate, in theory allowing an expectation of stasis of symptoms at least. 

It has been used to treat PD for well over ten years and was discovered almost by accident during a procedure called pallidotomy that has now fallen into disfavour because of its short-term efficacy. Very simply, during a pallidotomy, a small lesion was created in the brain, killing a tiny amount of brain tissue. This destruction of tissue helped to minimize the debilitating dyskinesia caused by the Levadopa drug therapy. While performing this surgery, it was discovered that the electrodes or probes being used to locate the optimum location in the brain for "frying" were actually causing an immediate improvement in the patient. (The surgery must be performed with the patient sedated but awake so he can give feedback to the surgeons). The pallidotomy, which permanently destroys brain matter, was replaced by DBS, which does not.

The description of DBS, as it was given to us, reads like something from the script of a Frankenstein movie or the Bionic Man. The surgery at the Montreal Neurological Centre lasts many days and the patient is also mildly sedated but awake for most of the operation.  The first thing that must be accomplished (apart from the months of preparatory assessment - more about that later) is the fitting and construction of a metal frame in which to secure the head, rendering the patient's skull completely immobile and allowing the surgeon to map the patient's skull and brain. The next step is to bore holes on either side of the skull with something that eerily resembles a Black and Decker drill, then carefully implant electrodes into the brain. That takes two days of three to six hour procedures on each side of the brain and the patient must be unmedicated the entire time. The third day of surgery, the only day under general anesthetic, is to implant the battery pack underneath the collar bone and attach the electrode wires that run subcutaneously from the electrodes, through the neck and down to the battery box. The patient is then monitored for several days to make sure he is stable, but the power is not turned on for some time until he has recovered from the surgeries. Then the power is gradually ramped up over a period of several months until the optimum level of juice is achieved. Thereafter a patient must visit the clinic repeatedly for the rest of his life to check for tolerance and to adjust the power level accordingly. Drug therapy must be adjusted too as the patient responds to the treatment.

There are great risks with this surgery, infection being very common and stroke a little less so. There are also, of course, all the risks associated with any brain surgery. The patient is assessed thoroughly for months beforehand to determine suitability. The factors that make a Parkinson's patient a good candidate for this surgery are many: good response to conventional Parkinson's medications, specifically Levodopa, the synthetic dopamine drug that has revolutionized Parkinson's treatments in the past half century; good overall health; good mental health; no deterioration in cognition; a good home support system.

In Michael's case his neurologist had to recommend him for this surgery attesting to his suitability in all the above factors. Once that letter was sent we were to await a summons from the Montreal Neurological Institute, one of the few centres in Canada that offers the procedure. That summons came many months later and the ball was rolling.

The doctor recommended Michael in the early months of 2007, not long after a mild heart attack, suffered in February of that year. The heart attack had followed a minor stroke or TIA in the fall of 2006. These two episodes did not seem to be an impediment to the surgery, at least not in the eyes of the neurologist. At the time of the heart attack, we were gradually weaning Michael off the new drug Azilect (Rasagiline) which had seemed so effective in the first few weeks but then very suddenly, for unknown reasons, Michael was back to his previous levels of low mobility and lethargy, if not even more so. Given the toxicity of this drug, I was reluctant to keep him on it if it was no longer effective. The doctor agreed and we started the long process of weaning. Michael had been completely off the drug for just a few days when the heart attack hit, but the literature warned against any surgery until the body had been free of the drug for a full two weeks. The neurologist, when questioned, denied that there could be any connection between the introduction, and subsequent withdrawal, of this new drug and the heart attack, even though some literature did make a loose one.

You can imagine, then, my terror that bypass surgery would be necessary for Michael. The medical staff was pressuring me to sign permission papers and waivers for such surgery if necessary. I had no choice if he were to go forward with any corrective procedures for his heart. Michael underwent an angiogram, angioplasty and the placement of two stents to open up a nearly completely blocked artery. In the end there was no need for him to go under the knife, but for the entire four days he spent in hospital awaiting those procedures, I repeated my concerns to every single hospital staff member I could lay my hands on to warn them of the problems with this new drug, afraid someone might not read his chart where a warning was written. At one point I think I may have accosted a rather confused janitor who happened to be dressed in scrubs, virtually indistinguishable from the medical staff. All this while Michael was in the throes of an extreme attack of psychosis, the most frightening one he had experienced up to that point.  He has since had many equally serious attacks to which we are now all quite accustomed but that first one was most alarming. Fortunately, he has no recollection of the event but for the rest of us, it is seared into our brains.

By late summer of 2007 we were on our way to Montreal for the first of many consultations.  We met with a PD neurologist and the surgeon who specialized in this surgery. I had done my homework and was convinced that the cognitive impairment I had seen developing slowly over the years might disqualify Michael.  I tried to discuss this with the doctors as well as the deep concern I had over his occasional displays of severe psychosis especially in a hospital setting. My concerns were dismissed. Of course the only word they were willing to consider was that of the referring doctor who had never witnessed these episodes and seemed to have ignored my reports. These two doctors confidently assured Michael he was on his way to a new life and sent us on our way with the promise of immediate follow-up for pre-admission tests. Michael left that appointment buoyed with hope.  I left in a rage so overwhelming that I speedily and nearly violently pushed Michael in his flimsy portable wheelchair over four kilometres, all the way back to the train station to make the two hour trip home. I knew in my heart this was a mistake.

Over the weeks of waiting for the next stage, I reminded myself that I am not a doctor and surely these men know better than I. Why would they offer false hope? I calmed down.

The next stage was pre-op preparation: visits with an internal specialist, a physiotherapist, an occupational therapist, a psychologist, then an MRI and blood tests. Things were moving ahead quickly and we made many difficult trips to Montreal, some day trips, some overnight. I planned for the ten day stay I would have to arrange in Montreal so I could be nearby for his entire hospital visit, all the while trying to keep at bay the wolves of serious doubt.

The visit to the internal specialist sounded an alarm bell.  Michael's heart condition needed to be reassessed. I was able, by some miracle, to make a telephone connection straight through to Michael's heart surgeon a day or two later.  Michael was in for reassessment soon after, another angiogram scheduled immediately.  A clean bill of cardiac health was issued. It seemed that the path was being magically cleared for the DBS surgery.

Then everything seemed to come to a grinding halt. Any contact I tried to make with the surgeon in Montreal met a dead end. His sweet, but slightly batty sounding receptionist kept giving me vague but cheerful responses. She couldn't give me any idea how long things might be, yet on other occasions she gave great hope that surgery could be imminent, all the while obviously shielding the great man from my pestering calls. All this took well over a year and a huge toll on Michael's mental health.  We put everything on hold, making his surgery the priority, not wanting to miss the call giving us a definitive date, the call that never came. No reasons were ever given for the delay besides vague murmurings about a new fiscal year and budgets.

Finally, in frustration, I tracked down the surgeon on the internet and actually found an email address. I expressed my concern about the debilitating effect the wait was having on Michael and how his dementia was now escalating. But none of this was new, just more extreme than it had been that first visit in 2007.

This was spring of 2009, more than two years after that reference letter was written by Michael's attending neurologist. My email must have penetrated because some time after it was written, I received a phonecall from the surgeon himself asking me to clarify my concerns. I had to stifle a sarcastic laugh. Wasn't that what I had been trying desperately to do for the past two years? Why was he suddenly listening now?

An appointment was made; we were to be in Montreal a week later.  Michael was filled with hope. I was not but I kept that to myself. Once again we met with both doctors and yet another cognitive test was issued. The doctors made another grand pronouncement that all my husband needed was the reduction, if not removal, of certain Parkinson's drugs, what they deemed to be responsible for these problems.  "You will get your husband back," they asserted.  My doubting heart fluttered hopefully for a moment and I set to work administering the new drug regimen.

Several weeks later, time for the new drug reductions to have worked the promised miracles, we were summoned again.  The appointment was for April 30. Be there. I remember the date clearly because I had booked an appointment for myself on that day, an appointment for which I had had to wait months.  When I raised this issue with the person issuing the summons, she told me I'd have to reschedule my own appointment. Okay. Done. I wasn't looking forward to that first mammogram anyway.

Both doctors were present again. Another cognitive test was administered but Michael failed it miserably. This time the news was bad: Absolutely no surgery, dementia far too advanced, the risks too great. Surprise, surprise. Michael was devastated. I was struggling simultaneously with enormous relief and another attack of extreme anger.  I wanted to rip these men apart. My poor husband sat slumped in his wheelchair and announced he didn't think he could go on.

It took me a long time to come to terms with the callous treatment my husband suffered. I know these doctors are compassionate people and are working within a complicated, underfunded and imperfect system, but I wonder if they are aware of the impact these long uncertain waits have on their patients, indeed on their families.  I wonder, too, if the wait exacerbated my husband's condition and, if things could have progressed as quickly as was first promised, whether the outcome might have been happier. Or maybe my instincts were right all along and I might have lost my dear man under the knife (drill?) much sooner, or worse, have him return home in a vegetative state, a fate that has befallen some who have undergone this surgery.  I have come to realize that such retrospective second-guessing is futile. We have put it behind us now, the writing of this the last nail in that coffin.


*Reference: Blair Ford, M.D., Deep Brain Stimulation for Parkinson's Disease, Parkinson's Disease Foundation, New York, 2005