The agony and the ecstasy of deep brain stimulation surgery | Hacker News Reader

The agony and the ecstasy of deep brain stimulation surgery

tmrwedition.com

159 pointsmasijo55 comments

I've had fully awake brain-surgery. 1990 I was under 16 years of age. I had a tumor causing epileptic seizures. I had my right-temporal lobe completely removed.

I was talking to the surgeon while he worked on me.

They needed to communicate to (a) make sure they didn't affect my speech center, and (b) try to manually trigger a seizure (aura) to test if they were close. I smell burnt toast Dr Penfield. [ https://www.youtube.com/watch?v=pUOG2g4hj8s ]

The most painfull part of the procedure was getting the needles under my scalp to numb the skin (a local anesthesia) before they drilled in.

The mostly used hand-tools.

2 holes were drilled (using a hand-drill). They created a large reverse question mark, going from infront of my ear (in my sideburn), up around the 'corner' of my head, and then back towards the back of my head.

They used a hacksaw, and then the flap that was left over was laid back onto my head.

I'll be happy to answer any questions that anybody may have.

I'm not quite sure how to phrase this, but here goes: during this procedure did you experience anything that you feel you could not have experienced absent someone physically poking your brain?

In short, no. The operation itself lasted for over 12hrs, but I am only aware of (approximately) the first hour. So weird shit may have happened, but I have no memory of it.

How come you only remember the first hour?

Mostly because I had severe head trama! =) lol At some point they put me out, so that messes with your memory too, but I think `brain surgery` is a good reason to not being able to remember.

If you get into a car accident and hit your head or get a concussion you don't remember everything either.

Did your brain manage to adapt to the loss of the right temporal lobe ???.

"The non-dominant lobe, which is typically the right temporal lobe, is involved in learning and remembering non-verbal information (e.g. visuo-spatial material and music)"

My memory is not as good as it once was. Especially involving numbers. (I once was REALLY good at remembering phone numbers. Not a Savant (Rainman) level of knowing phone-books, but any number my mother ever needed (she would tell me to remember a number, and I could memorize the pattern of the numbers on the dial-pad.)

After the operation, I can only remember things that I concentrate on, and tell myself that it's important. i.e. I know Wednesday is garbage day, but I don't know what day it is today. Or another example, I know my wife's birthday is June 2nd, I just can't remember the year.

I used to be weirdly good at memorizing numbers when I was a kid too, but that ability faded for some reason as I got older. Not sure how sudden of a loss it was for you, but perhaps your memory might've changed somewhat anyway as you got older, even if you hadn't had the surgery?

That is completely possible. The sad fact of this incident in my life; I will never know if some behaviours are because of the tumor or not. It really is a Nurture vs Nature toss-up for me. =)

I'm considering DBS and also having part of my right temporal lobe removed, for what sounds like similar reasons.

Did it affect your personality a lot?

Not that I am aware of.

I was in the middle of my teen years, which is already a period of intense personality change.

I was always a quiet introvert, so that hasn't changed. I'd say my core personality is about the same. Intensely curious, and indifferent to societal norms.

Did your seizures stop after the surgery? Has the tumor or seizures returned at all?

The tumor has not returned. The 'big' seizures (I mostly had [these names have changed alot, I don't know the current naming scheme.] Psychomotor seizures) and I had 1 Gand Mal. These have all stopped.

In the last 6'ish years the pre-seizure aura (these are now called considered seizures of their own) have returned. I get perhaps 1 every 4 months (if I had to guess). I have been in contact with my Doctor & specialists to make sure it's not a tumor growing back. The specialist has informed me that it's common. If it becomes more frequent or severe in intensity then we can look into it doing something about it.

> They needed to communicate to (a) make sure they didn't affect my speech center

What if they suddenly realized that they affected your speech center?

Would it have been too late and you would have permanent damage?

They use an instrument on the area first to gauge the person's reaction before actually operating on it.

Interesting, thanks.

Listening to his recording of the subthalamic nucleus—as he describes it, "the sound of hundreds of thousands of your own neurons excitedly relaying the information they carry to one another fill[ing] the room"—was worth the read alone.

Highly recommend reading this post.

To the author: thank you for sharing, and I wish you a successful course of treatment.

Yeah that was super interesting and when I listened to the recording the first thing I thought of was the high frequency (well, relatively speaking of course) clicking sounds dolphins and some other cetaceans make. Always wondered if there was a connection there when brain information is translated “in the raw”.

Very beautiful these connections we can make, imagine if dolphins can think as one… click click click.

I didn’t see that it was stated what the surgery was for, and I am unfamiliar with deep brain stimulation.

For anyone else in the same boat, for the author, it is a method of managing the symptoms of Parkinson’s disease.

A fascinating read.

> Normally if I had gone till noon without any medication I would have had a pronounced tremor

Yeah, probably some type of Parkinson's.

He has another post describing that he has parkinsons: https://tmrwedition.com/2021/01/30/pros-and-cons-of-four-dif...

Small correction, DBS is not limited to just Parkinson's treatment.

Although Parkinson's is the most common disease to be treated with DBS, the technique is used in a broad set of diseases/conditions where you have some form of dystonia.

Source: Worked on a Neurosurgery software suite a few years back.

Here's an incredible video detailing a DBS procedure, treating a woman with essential tremor. It is remarkable how you can see her symptoms improve in realtime via her movements and handwriting.

https://www.youtube.com/watch?v=isYY2jvd8PU

If I ever had something that would require this I would prefer to just be euthanized or something. I cannot even read this article without recoiling in horror.

I am sure there are other people with a phobia of surgery like myself, what do they do for those people? I would definitely faint before entering the operating room.

I have something that does require this and I couldn't finish the article. I have no idea what I'm going to do.

I'm facing potentially fatal seizures or DBS.

I want to help. I can call you if you want, or offer my phone number for you to call me.

It's not bad. You don't feel ANYTHING. If you've ever been to the dentist and had a cavity filled then that is the extent of the horror. The sounds are no worse, just different.

There is no reason to suffer. Let's talk about this. (It's 23:15 Eastern, I'm going to bed soon. But we can also talk tomorrow.)

Here's the number you can reach me at: 313-524-1974

My name is Matt.

You are being a serious bro, Matt, and I commend you for it! But I would hate to see you get deluged by phone spam as a result. Please consider spelling out the letters of some of the digits in your phone number before it gets scraped.

I always wondered, years have gone by, haven't spammers figured out how to scrape numbers from all the little tricks we have done over the years? Maybe even a reverse GPT-4 type AI?

It's a voip number that I created just in case this person wants to talk. I can/will delete it if I start to get spam/abuse.

I'm not by any means an expert in this, but I'm relatively confident that patients undergoing such procedures aren't going in drug-free. Something like diazepam at least. My mother had fully awake surgery on her eyes, and that's pretty much what they did. She was awake, but they gave her something that made her completely ambivalent about the procedure. Zero anxiety.

Yeah, I also got something and mine was for a back operation (not awake at all). It makes handling the patients a lot easier I guess.

Neurosurgery resident here. MR-guided focused ultrasound is a rapidly spreading non-invasive approach to deep brain lesioning that is perfect for patients with fear of surgery or with significant comorbidities that heighten the risk of general anesthesia. The patients wear a frame similar to the one in the OP but there are no further incisions. They go home the same day. Questions remain regarding its durability of effect as compared to invasive electrode implantation but it is a hot topic for research.

I've had a number of surgeries and in my experience they give you a number of sedatives before even wheeling you into the OR.

Not sure how many you would need to overcome deep seated phobia, but probably doable.

The hard part would be convincing you to go through with it.

Oh my - reading this makes me feel very funny. I don't think of myself as that squeamish; but anything involving sculls, brains and drilling me makes me feel instantly queasy.

Amazing that this is having a positive effect, but sweet lord .. I find it difficult to even think about.

I was fitted with a deep brain stimulator for dystonic tremor in 2012. Their were two operation two weeks apart. In the first operation the battery was put in my chest and six screws place around my skull. Scans are done to calculate the location they want to place the electrodes relative to the screws. The second operation was done under local anaesthetic, they drilled two holes in the skull and inserted the electrodes

> During which time my hair was cut, but only the parts that might get in the way of the procedure, giving me that classically handsome friar tuck look

Of the many weird things I wonder about, this has been on the list for a while. Why was that totally weird haircut done? To make clergy even more irresistible than they already were? Some kind of trying to both having and eating your cake by having hair while not having hair?

Your surgeon is not your hairdresser. He cut away what he needed to cut away, if you want to cut away more later you can do it yourself.

The question was about the specific hairstyle ('friar tuck'-like) being done at all and not why the surgeon did it in this story.

https://en.wikipedia.org/wiki/Tonsure

It's apparently meant to evoke a crown representing the victory to be gained in the afterlife through humility on earth, in imitation of St. Peter.

It even hurts to read the title.

Ha. There's a short story in which the narrator is invited to a dinner to eat monkey brain, but is tricked and consumed himself. Can't remember the author or name of the story (would think ea Poe or Roald Dahl). Was making a big impression on me when I first read it as a child.

Anyone knows the story ?

I strongly recommend you never watch Red Dragon: https://www.imdb.com/title/tt0289765/

How do they put in the wires into the brain without messing up some critical parts along the way?

The neurosurgeon meticulously plans the exact trajectories prior to surgery and we use a combination of software and hardware (Stealth or Brainlab) to ensure we follow the planned path. Of course, complications still occur but are fairly rare, serious or permanent ones even more so.

Are they actually piercing into the brain matter or are there gaps in the brain? Does the trajectory avoid actual neurons on the way?

The brain matter is indeed pierced. While “you only use 10% of your brain” is a myth, much of the brain is what we call non-eloquent, meaning it can be damaged or removed without any noticeable effects. Especially when it just means being pierced by a 2-3mm diameter lead. Are there hidden side effects that we are simply unable to recognize? Sure, but with as primitive an understanding of the brain as we currently have, we are forced to rely on a more pragmatic rather than philosophical approach.

Great answer! That explains so much thanks.

> I did wonder, what would it be like if something went wrong... What would I experience? Would the world suddenly go dark? Would my conscious awareness and this chain of experience I call my self suddenly shift to something else?

I think this would have been an important question to ask the surgeon prior to surgery. What if something goes wrong?

Probably about the equivalent of ‘undefined behaviour, in a computer program - maybe you segfault, maybe you unlock the ability to speak Spanish fluently. It all depends on the when and where.

Reading this makesme

That's why I always go for the non-invasive brain surgery whenever the option is available.

You’re probably joking but TMS (transcranial magnetic stimulation) is a real thing. In which electromagnetic fields are used to stimulate the brain from the outside.

My favorite TMS fact is that if you target a specific area of the brain, bombard it with electromagnetic stimulation (which apparently "disables" it for 20-30 minutes) you get a remarkable increase in working memory (nearly a doubling, if memory serves me).

Whoa, that sounds really interesting. Source by any chance?

Reply on news.ycombinator.com