Saying yes to electrodes in the brain

In the previous posts, I told you about the disease, what malfunctions, and how you build a life despite everything. This post is about the moment you ask yourself the following question: do you agree to have your skull opened to implant electrodes in your brain?

That's not a question you take lightly. And the road to answering it was long, chaotic, and sometimes brutal.

The starting point: knowing it exists

Deep brain stimulation, I'd heard about it for years. My neurologist had mentioned it, I'd read things, I knew it was a theoretical option for DYT11. But between knowing an operation exists and concretely considering undergoing it, there's a chasm. A chasm made of fear, ignorance, and that very human reflex of postponing a difficult decision as long as you can still live without it.

In 2023-2024, I decided to take the step of consulting. Not the operation yet, just the consultation. Go see neurosurgeons, understand what DBS really is, ask questions, evaluate the risks, measure the possible benefits. See if it was for me.

I consulted three teams: Montpellier, Bordeaux, and Paris, at the Pitie-Salpetriere.

Montpellier: morale in the gutter

The first consultation was Montpellier. And I'll be honest: it crushed my morale.

The specialist I met was about as friendly as a prison door. I'm someone who's anxious by temperament, I was coming for the first time in my life to learn about brain surgery, and I knew nothing concrete about DBS. I needed someone to explain things to me, to reassure me at least a little, to take the time to answer questions I knew were clumsy but that were mine.

What I got instead was a specialist who told me, essentially, that I was stupid for not having had the operation sooner.

You don't say that to someone. You don't say that to a patient who's discovering a medical world he doesn't master, who's anxious, who's making the effort to come consult when he could have kept postponing the decision indefinitely. That kind of statement doesn't inform, doesn't motivate, doesn't reassure. It crushes. It guilt-trips. It makes you want to go home and never bring it up again.

I left Montpellier with lower morale than when I arrived, and a reinforced conviction that the medical world has a serious problem with the way it talks to patients.

Pitie-Salpetriere: the reset

And then there was Paris. The Pitie-Salpetriere.

The functional neurosurgery team reset me. Not in the sense that everything became simple or that my fears vanished overnight, but in the sense that, for the first time, I felt I was dealing with people who knew exactly what they were talking about and who took the time to explain it.

And at the center of this team, there's someone who must be named: Professor Carine Karachi. Fantastic. There's no other word. Competent, clear, humane, able to explain brain surgery in a way that you understand what's going to happen without drowning you in jargon and without talking down to you. Someone who speaks to you like an adult capable of deciding for himself, and who takes the time to answer questions, including the ones you find stupid yourself. In a medical journey where you spend a lot of time feeling like one file among many, crossing paths with a doctor of this caliber makes an immense difference.

The Pitie gave me confidence. Confidence that this operation was serious, supervised, well thought out. Confidence that the indication would be established rigorously, that I wouldn't be pushed toward the operating room if the conditions weren't met. Confidence in the process. The Pitie-Salpetriere gave me back what Montpellier had taken: the desire to keep moving toward a decision.

Bordeaux: a formality

I also consulted in Bordeaux. But to be honest, by the time I went, my choice was already made. The Pitie-Salpetriere had laid the groundwork, the trust was there, the team was identified. Bordeaux was a step, not a turning point. I'm not saying the team wasn't competent, I'm simply saying that when you've found the place and the people you want to walk this path with, you know it, and everything else becomes a confirmation rather than a discovery.

Back to Paris, then, for the pre-surgery examinations. The real countdown was beginning.

Back to the Pitie: the operability assessment

But I need to talk about what was less than stellar, because the operability assessment is a journey in itself, and it can be grueling for reasons that have nothing to do with medicine.

When you're being evaluated to determine if you're operable, you go through a battery of neuropsychological tests. That's normal, it's necessary, nobody contests the principle. What I contest is the way certain people in charge of administering these tests behave with patients. When you have severe myoclonus-dystonia, when you're coming for an evaluation that could potentially lead to brain surgery, and when you're anxious by nature, the least you could expect is to be treated with a minimum of respect and consideration.

What I got instead, in some cases, was unacceptable behavior. I was infantilized, as if having a motor disability implied an intellectual one. I was treated condescendingly. I was forced to write by hand when I had explained it was impossible, as if calmly explaining it wasn't sufficient and they needed to verify for themselves that the patient wasn't lying. I was pricked with a pin without warning, as if they were testing the reflexes of a guinea pig and not a human being.

I could continue the list. I'll stop here because this post isn't a trial, but the message is this: there are people in hospitals, including the best ones, who haven't understood that their role isn't just to administer a test, but to administer it to a human being. And when that human being is already made fragile by illness, anxiety, and the stakes of what's being decided, the least they could do is not make it worse.

This doesn't change the overall assessment: the Pitie-Salpetriere remains the place where I had my surgery, and I would make that choice again without hesitation. But this journey would have been less painful if certain people had done their job with a little more humanity.

The phone calls that changed everything

Yet it wasn't Montpellier, nor Bordeaux, nor even the Pitie-Salpetriere that made me take the leap. What made me say yes were phone calls.

Phone calls with other patients, already implanted, who had been living with DBS for months or years.

Doctors can explain the statistics, the success rates, the surgical risks, the neurophysiological mechanisms. That's essential, it's their role, and you need that information to make an informed decision. But there's something doctors can't give you: lived experience. What it feels like day to day. How you feel in the morning waking up with a device under your skin. Whether the movements really come back. Whether life concretely changes or if it's mostly on paper.

Those answers, only other patients can give them. And when someone living with the same electrodes, in the same dystonic body as yours, tells you over the phone that it changed their life, that the movements came back, that the myoclonus calmed down, that it was hard but it was the right decision, that carries a weight that no scientific article will ever match.

It was there, on the phone, in conversations with strangers who shared the same disease and the same choice, that I understood I could go for it. Not that I had to, but that I could. That the risk was worth taking. That the bungee cord, even damaged, was worth jumping for.

What I take away from this period

The decision to have brain surgery isn't made in a doctor's office. It's made within yourself, at the end of a slow process, made of consultations, research, sleepless nights, conversations, and a moment when something tips over. That moment is different for everyone. For me, it came through the voices of other patients on the other end of the line.

If you have DYT11 and you're wondering about DBS, my most important piece of advice isn't medical. It's human: talk to people who've done it. Ask your medical team to put you in touch with other patients. Ask them the questions you don't dare ask the doctors. Listen to what they have to say, the good and the less good, and form your own opinion.

And if you have no one to call, call me.

I'm not a doctor, I won't give medical advice, that's not my role. But I've been through it, I know what it's like to be afraid, to not understand, to feel alone facing an immense decision, and to come across people who push you down instead of helping you. In my experience, the people who actually answered my questions can be counted on one hand. Some invoke the principle of "you don't need to know." Others consider you too stupid to understand. In my case, only a neurosurgeon, a neurologist, and a resident were able to answer me. I want to explain, reassure, accompany, answer the questions too few people take the time to hear. I want to give what I so rarely received. It's as simple as that.

The next post will tell the story of the operation itself.

To be continued.