It’s one thing knowing that your operation is to take place in the autumn but quite another to know exactly the date and location. The email (or perhaps that should read THE email) arrived today, confirming in black and white, the date when I go under the knife. No, I’m not going to announce it here but let’s just say that if it goes well, there will be fireworks!
Immediately after reading the email, I begin to notice a change in myself. Suddenly things previously only discussed in the abstract are transformed subtly into tangible realities. And that makes all the difference. ‘In the autumn’ is vague and comforting. The ‘Xth of November’ is unsettlingly immediate. Okay it’s two months away. Plenty of time to pack my hospital bag and be ready. Ridiculous then, as I did, to fish out an overnight bag and start packing it. Better to make a list. And calm down.
I sat for a moment or two on the edge of my bed while I gathered my thoughts. I’d be lying if I said I wasn’t nervous. No matter how routine the procedure, how skilled the surgeon and how reassuring the statistics it is still enough to raise the heart rate a little. That’s only natural. Any procedure in which your brain is opened up to the atmosphere, however briefly, is likely to engender at least a modicum of anxiety. After all, we have evolved skulls for very good reasons – to keep the brain in and the atmosphere out. Neurosurgery respects no such distinction.
Reduced to its basic acts, the surgery is straightforward. You could do it on the kitchen table*.
1) Toss a coin – heads for left, tails for right.
2) Saw a hole on one side of the skull using a drill and a circular saw attachment (£29.99 in B&Q until the bank holiday). Oh, about the size of pound coin I guess.
3) Jab the brain with the electrode (that’s the one that looks a bit like a cocktail stick). You might want to practice this stage beforehand – say with a cocktail stick and maybe a raspberry milk jelly until you’ve got the hang of it. Better safe than sorry.
4) Fill the hole with Polyfilla (or whatever the surgical equivalent is) and drag wires out under the skin to the chest. You remembered the wires, right?
5) Implant the battery pack (about the size of a Baby Bel cheese portion) on the left-hand side of the chest and connect to the electrodes.
6) High five the surgical team, wake up the patient and wash down the table ready for the kids tea when they’re back from school.
7) Succumb to a brief moment of panic when you realise one of the Baby Bels for the children’s tea is missing. Turns out to be in your pocket.
8) Note to self: cheese has no place in the operating theatre.
Joking aside (you did realise I was joking, right), the first part of the surgery is genuinely Neolithic. Boring holes in the head (trephining) was a popular treatment for insanity, seizures and headaches in those cave dwelling times. If leeches didn’t work, opening up the skull was the next step in the Neolithic manual of medicine. Amazingly, some of those trephined survived. Well, long enough to have the procedure repeated – there are examples of Neolithic skulls with evidence of repeated trephining, some holes being partly healed.
As I write this I realise that I’m probably not painting the best possible picture for those whose enthusiasm for DBS might be wavering in the light of such revelations. I’ll stop.
Sat on the edge of the bed, my mind wanders beyond the simple list of toothpaste, deodorant et cetera. Soon I’m thinking of the whole surgical procedure and how it’s assessed. For the most part, the presurgical workup involves discussion between patient and the DBS team (neurologist, neurosurgeon, DBS nurse, and a few others) of what to expect. We talk a lot for instance about expectation management. That sounds like some kind of administrative or managerial term but it’s really no more than checking that the patient has good enough insight into their condition to know what kind of improvements to expect. In simple terms, make sure the bar is at the right height. If a patient believes DBS is a cure, they are on course for a disappointment. If they think that a small reduction in tremor is their best possible outcome, then they will be pleasantly surprised.
I like to think that my expectations are realistic and I will go through them in more detail in a later blog as D-Day, or should that be D(BS)-Day draws nigh. In general, I’m more interested in numbers now. I am no longer satisfied with verbal descriptions – ‘the chances of anything wrong are very low’. what I want to read is that the likelihood of perisurgical stroke, heart attack or infection is X, Yand Z% respectively. For the same reason phrases like ‘big improvements in motor scores‘ fails to float my boat either. I want to see A% improvement in sleep scores, a -B change in gait asymmetry and so on.
I have an innate impatience with descriptors that don’t adequately describe. After all one person’s ‘huge improvement’ is another person’s ‘better but no big deal‘. So I want to see that they both had a 15% improvement in UPDRS scores. Or whatever.
But there’s plenty of time for that. The email detailing the date of my operation invites me to get in touch if I have any questions about the procedure and the time in hospital. They may regret that. Because I have questions. Boy do I have questions.
*No, don’t actually do this on the kitchen table. Or any table. In fact, don’t do it at all. Don’t even think about doing it. This is a procedure for skilled professionals and, in case you’re wondering, no that’s not you.