Yesterday was the big day. Well, technically, one of a number of big days. But, in this case, the day upon which all other days rest. The day I met the hospital’s multidisciplinary DBS team and they had a chance to meet me. Four of them, two of us (my younger daughter came to assist) and a nominal three quarters of an hour to answer some pretty big questions. Put like that it begins to look like speed dating. Except for the fact that several of them wanted to stick electrodes in my brain. Not there and then you understand but at some point.
I was expecting a sales pitch in essence. I was expecting to be bowled over by hyperbole and misplaced enthusiasm. I could not have been more wrong. We talked about realistic expectations, about side-effects, about benefits and so on. And all in the most sober down-to-earth manner. They did not try to “sell” me on the idea of DBS. Throughout the consultation they emphasised that it was my decision and mine alone whether to go ahead but that, in their view, I met the criteria for DBS. The ball was in my court.
But the thing that impressed me most was their willingness to bandy numbers with me. Now, as you know, I am a grizzled old neuroscientist, strong on statistics, light on fluffy feelings. Like so many scientists, I am unmoved by “very rare” or “relatively common” or “in a proportion of cases”. One man’s “very rare” is another man’s “not at all” or “rare but not unknown”. It reminds you the old Woody Allen joke about the man and his wife separately seeing their shrink and answering the question “how often do you have sex?” with “hardly at all – maybe three times a week” and “constantly – maybe three times a week”. Well it made me laugh. But my point is that descriptors provide nuance but not detail.
Start using numbers and it’s a different matter. The moment you start saying “one in 30”, “62%” and “11/19”, you have my undivided attention. I understand numbers. Numbers are the language of science. My PhD supervisor and good friend Zyg had a very simple maxim – “if you can’t describe it in numbers, it’s not science”. Although I might quibble over the minor details, it nonetheless carries weight as a general rule. And so it was yesterday. They spoke to me in numbers, instantly setting me at ease.
In the end, DBS surgery inevitably presents risks. They explained them to me in numbers – my likelihood of dying, of being seriously damaged, of minor complications, and all the perioperative niggles. And they gave me the numbers for improvements in tremor, movement, stiffness and so on. And they told me all the things that DBS would not help such as balance, even gait to some extent. Each number was presented neutrally, with no change in expression to indicate personal views although, in fairness, the facemasks probably eliminated all nuances of expression anyway. Itwas all a case of deciding where the risk-benefit fulcrum lay and totting up the numbers.
My daughter and I were a good double-team. I would pitch in with the question, then she. We alternated, each presenting a different facet of our collective anxieties. And one by one they answered each to our satisfaction.
Perhaps the most personally satisfying moment occurred when I expressed my reservations about the likelihood of achieving the kind of results found in younger PD patients since I’m 63. The surgeon, with a smile I could see behind his mask, said it’s not a case of chronological but functional age and he had seen my MRI scans and was satisfied that this was a good brain without evidence of atrophy. In essence the cranial cavity was filled with brain rather than cerebrospinal fluid. Good to know. And fingers crossed of course.
All other things being equal, they felt I was a good candidate and were happy to operate with one proviso which I’ll cover in the next blog. The whole tenor of the discussion was positive and engaging. Once I had DBS done, I was part of their family forever. It was more than just a surgeon/neurologist speaking to a patient. They would look after me. It was warming.
Their final words to us, as we left, were that we did not have to make a decision on the spot. We should take some time, reflect upon it and then let them know the answer.
My daughter and I headed to a nearby coffee house to regroup and discuss what we had heard. Nothing is of course without risk. Would I considered this procedure 10 years ago? Obviously not. And I know for a fact that I didn’t even entertain the idea, so determined was I to fight the illness in my own way. But time brings a degree of maturity and understanding. We throw away the foolish fancies of youth and make sober judgements where once we would have dismissed with flippancy. But back then I needed DBS like a hole in the head (I’m sorry, I couldn’t stop myself).
Now I recognise it for what it is. Part of the modern armoury in the treatment of PD. Who knows, it may one day be a condition remedied entirely by surgery. Wouldn’t that be funny. True the procedure is mediaeval, barbaric even. Liked trephining, practised in Paleolithic times. Maybe they had DBS 3000 years before Christ. (No, don’t rush to Wikipedia). It’s not a serious suggestion.
Even for somebody who revels in numbers, it is quite sobering to apply them to one’s own predicament, to reduce one’s own future to a series of calculated risks and gambles. Rather like Douglas Adams’s computer in The Hitchhiker’s Guide to the Galaxy, my future could be described by a relatively simple quadratic equation. The probability of this, the likelihood that, the risk of the other. All reducible to numbers. Yes, things could go horribly wrong. I might even die. It is technically possible but extremely unlikely. Much more likely is that it would go well and I would achieve at least some meaningful benefit for the next several years. It comes down to a balance of probabilities, nothing more nor less.
I caught the train home with the surgical team’s words echoing in my ears. It was my decision and my decision alone. “Take your time”. I didn’t need to.
It’s time to roll the dice.
DBS Diary 03: The hard yards