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09 May 2016 @ 11:10 am
Man & Cyberman  

“You don’t point very well, do you, Grandpa?” said one of my father’s grandsons, critically, when that child was about aged five.

It’s true, though. Grandpa didn’t point very well, because 15+ years ago my Dad developed what’s called an essential tremor, which is, as I understand it, basically a short in the electrical wiring of the brain that causes (usually) the sufferer’s dominant hand to shake uncontrollably, but which can also affect the other hand, the head, and the gait.

Dad, never one to do things by half measures, got the whole lot. It’s gotten increasingly dramatic, and he hasn’t been able to write with a pen or pencil for well over a decade, or eat without holding nearly everything—cups, utensils, food that can be eaten by hand—in both hands, to render some degree of control over its motion. It’s not much control, though, and it’s exacerbated by the fact that repeating the action makes the shake worse, so it goes from not being able to pick something up steadily to his hand wobbling dramatically off toward the sky when he even tries to reach for something.

It’s a fairly common disability, it turns out, affecting about 1 in 10 people over the age of 60. I didn’t even know it was that common until a few days ago.

It’s also pretty damn debilitating, and for the past couple years Dad’s been in contact with a neurologist in Dublin who ran a bunch of tests, shouting with delight as Dad, attempting to touch his chin or pick up a cup, shook more and more extensively, until the gestures were wholly and completely out of control.

This doesn’t sound like something that you’d be shouting with delight over, but to the neurologist, it was proof positive that Dad was probably a perfect candidate for something called Deep Brain Stimulation, which sounds pretty dramatic but is in fact even more dramatic than it sounds, because it MAKES YOU A CYBORG. Surgeons insert (very slender) wires deep into the brain, reconnecting the part that’s shorting out, then run the wires under the skin to behind the ear, then down behind the ear, along the neck, to a pacemaker inserted under the collarbone.

Dad had DBS surgery Wednesday morning.

The whole exciting story behind the cut!

It’s a two-stage surgery. The first part is drilling a couple holes in the head and sliding the wires in, then adjusting them until the patient’s tremor stops. The second part is putting the wires under the skin and making an incision for the pacemaker, inserting it, and closing everything back up. Often the stages are done separately, but the surgeon told Dad that they expected everything to go smoothly and planned to do the entire thing in one go. It would be, in the surgeon’s words, a long day, but then it would be done.

Dad has described the first stage, which is done under a local anaesthetic (it has to be, so the patient can respond to the tests given so they surgeons can see how close to the brain’s shorted-out spot they are with the wires), as one of the most exhilarating, exciting, *fun* experiences of his life.

There was a quite large team working on him—two full surgeons, one of whom, in NHS terms, was a Mister, which is Very Important, more important than just Doctor, and the other of whom, who was less senior, was a Registrar, which I believe entitles him to be called Doctor. The Registrar was the junior surgeon on the team, and I believe they had at least one clinical nurse on hand *besides* the one who regarded her primary job during the surgery as being there to literally hold Dad’s hand; the surgery means the patient’s head has to be immobilized, and they have a quite narrow field of vision, and for some people that’s very frightening, so this nurse is always there to hold the patient’s hand and to provide a sense of grounding. It’s an action of pure kindness and generosity.

There were three people on the anesthesiology team, the lead anaesthesiologist, her assistant, and a clinical nurse. I met the lead, who always comes by the wards to check up on her patients a couple hours after they’ve come out of surgery to make sure they’re doing all right. She was an incredibly kind, sweet woman who—among other things—regards it as her job to keep the surgeons—“the boys,” she called them!—in line. Dad absolutely loved her, and I could see why. She was just delightful.

So there were at least seven people *working* on Dad, and he said that one of the incredible things about the entire surgery was realizing that he was there in that room with all of these highly educated, talented, dedicated people whose sole purpose in being there was *to help him*. That was hugely uplifting and emotionally intense for him, as was the knowledge that—having posted about his upcoming surgery on Facebook—that there were literally hundreds of people who had posted saying that they would be keeping him in their thoughts and hoping for the best for him. He was positively elated by that knowledge and those emotions, and then on top of that he simply found the surgery itself to be absolutely fascinating.

The thing he was most nervous about, he said later, was the drilling: both the pins that they were going to put into his head to immobilize him, and the actual breaking through his skull to access his brain. He was told again and again about the amount of pain he might expect—a sharp bee sting for the first anaesthetics before they put the immobilizing pins in, perhaps some discomfort with the pins, perhaps a *very* sharp, intense pain when they cut through the brain’s protective membrane (which, although he was numb from the eyebrows up by that time, is something that just apparently hurts like hell for some patients despite the anaesthesia)—but none of it transpired; he thought the initial painkiller shots were nothing like as painful as a bee sting, and the rest of it just didn’t hurt, which was obviously quite wonderful.

Once the pins were in place they put a cap onto the pins, and then a cap onto the cap, and overlaid an X-Ray taken several months ago with his brain now so they could most accurately insert the wires, and then they drilled little holes into his head. Apparently that was all actually sort of great fun, with a lot of laughter—Dad was making cracks about thick Irish heads and told the story of his oldest grandson saying, “Grandpa, why do you have such a big round head?”

“How old was he?” asked the Mister, and Dad, deadpan, said, “Seventeen,” which made two of them laugh and a third say, “And he said *what*?!” :) (Breic was actually about three at the time. :))

Dad asked how they knew where and how to slide the wires in, and the Mister said, “Well, we just calculate the angles and it goes right in. It’s really just math,” which on one hand of course makes sense and on the other is still boggle-worthy. They hand-drill the holes into the skull because they need to be able to feel what they’re doing, and although Dad knows perfectly well they were using electric saws—he heard them saying, “Saw, please,” to one another—he and I both still have this idea of them using a drill something like a hand-powered egg beater, and every time we talked about it we would both do little rolling motions like we were using one of those. :)

They had him hold a cup and do things like turn it over, bring it to his mouth, etc, and told him *not* to try to control the tremor, as they wanted to be able to see most fully where the wires would do their work. As the wires slid toward where they were supposed to settle, Dad’s hands steadied involuntarily, which is exactly what was supposed to happen and was equally astounding to him.

When they finished with that part of the surgery, before Dad went under a general anaesthetic for the second part, the Mister said that it had gone tremendously well and that they thought they’d inserted the wires absolutely perfectly. Then Dad was unconscious, so he had nothing to report for the second half, but when he started coming out of the general, the clinical nurse said to him, “Well, that all went so well you’ll probably be able to go home tomorrow or the next day,” which, given that we’d been told to expect a 10 day hospital stay, was…unbelieveable, really.

I was waiting for Dad in the ward when they wheeled him back in, so the first thing I heard him say, very cheerfully, to someone, was, “I’m a cyborg now!”

Now, look. I was prepared for him to look pretty Frankensteined. I mean, brain surgery. That’s pretty massive. I expected some serious cuts and stitches and things.

Instead, there’s truly astonishingly little trauma. There are dots visible lower on his forehead, above his eyebrows, where the pins were put in to immobilize his head. There are matching ones at the back of his head. Part of his head, above the left ear, has been shaved, and there’s a cut where they changed the direction of the wires to run them down to the pacemaker, which is under a bandage at his clavicle. There are two small wounds on the top of his head as the actual insertion points; one, done by the Mister, is virtually invisible, and the other, done by the Registrar, is slightly less tidy but still looks like nothing more than perhaps a scabbed over scrape. I kid you not, I had to look at his head from no more than 12 inches away to see the faint divot on the Mister’s surgical hole. From two feet away I could see that there was a cut there, but I couldn’t see that a hole had been cut in the skull and replaced. 48 hours later I couldn’t tell from two feet away!

They had told Dad that it was quite common for the tremor to disappear immediately after the surgery, as a result of swelling and trauma. That’s exactly what happened: all evening Dad was doing things he hadn’t been able to do for years. He ate peas on a fork using just one hand. He ticked boxes on a meal chart in a controlled and tidy fashion. He handed somebody a cup, one-handed, and I said, “See what you did there?” and he gaped momentarily and said, “I didn’t even think about it!”

The tremor had begun to return by the next day, and we learned that after all of that, they weren’t even turning the power on for another month! They take that time to allow him to heal up so that when they*do* turn it on, they can calibrate the settings to the most dramatic version of the tremor, and therefore get the most good out of it.

The other astounding thing is that it turns out Dad is only the second person in the world to have *this particular* surgery done. It’s brand-new technology; previously they would use a single wire, but the ones he’s had inserted have 3 little (itty bitty super tiny) prongs at the end of each wire, which allows for a better electrical current to go through the shorted-out part of his brain…and the power settings are controlled by an app that, if the whole thing needs upgrading, can just upload the upgrades and recalibrate automatically.

Yes, you read that right. Debilitating hand tremor? Don’t worry, there’s an app for that! And the tech is so very new that they actually had a company representative at Dad’s surgery to observe, so he’s not just a cyborg, he’s got cutting-edge technology cybernetics!

How cool is that!?

By 24 hours after the surgery he was coming down from the ebullient high of the surgery itself, although he was still pretty starry-eyed in discussing it, and by the next day—which is when they did, in fact, release him from the hospital! 72 hours after the surgery!—he was pretty darn tired, which is no surprise at all. And now he’s home safely, cybernetics and all, and resting up from what has been an Awfully Big Adventure!

Posted with my father’s permission and, indeed, encouragement.

(x-posted from The Essential Kit)

 
 
 
Deborah Blakedeborahblakehps on May 9th, 2016 12:41 pm (UTC)
HOLY CYBORG, BATMAN.

I saw your posts on Twitter about him being in surgery, and I was among those quietly rooting for him. I am *amazed* to see the entire story, and so pleased to see that it turned out so well.

I hope that when they finally turn him on (snicker), it all works as planned. And that you are able to take a deep breath now, when I'm sure you didn't for some time.
cypherindigocypherindigo on May 9th, 2016 12:48 pm (UTC)
I have a friend who had a similar procedure done for his Epilepsy. It has done wonders for his quality of life.

Balticon has a wonderful Science Track and at one of those panels I heard a neurologist talking about using the technique to help people with chronic depression that can't be helped with medication. That was also the same presentation where he discussed the short term use of Ketamine as a treatment for depression.

Congratulations to your Father.
Anna the Piperannathepiper on May 9th, 2016 02:19 pm (UTC)
Oh wow, that's so awesome. :) Yay for dramatic life improvement for your dad! Also yay for awesome medical science!

May his recovery continue to be smooth and may he get to do many more excellent things.
6_penny on May 9th, 2016 03:02 pm (UTC)
Three cheers for your Dad. The process sounds fascinating (in the Spockian sense). He just better not go Dalek on you!
Jason Drakejasondrake on May 9th, 2016 03:11 pm (UTC)
I bet pretty soon he'll be feeling like six million bucks
raidingpartyraidingparty on May 10th, 2016 02:01 pm (UTC)
XD
I see what you did there.

Also, OP: I'm a random stranger from the internet, this post was featured on the front page.
Hooray for you and cyberdad!
kitmizkit on May 10th, 2016 02:07 pm (UTC)
Re: XD
Oh, was it? Cool. :) Hi, Internet Stranger! :)
mevennenmevennen on May 9th, 2016 03:55 pm (UTC)
Wow, that's amazing. I really hope he is soon on the mend, and it sorts out his condition. Very best wishes from us.
Fighting Crime with a Giant Dandelion Since 2013: Libellula juliapameladean on May 9th, 2016 04:16 pm (UTC)
That is amazing. I'm glad he got a little glimpse of what it will be like when they finally turn the power on. Maybe in the future people won't have to wait so long, though I guess healing takes the time that it takes.

P.
martianmooncrab: pic#59898509martianmooncrab on May 9th, 2016 05:11 pm (UTC)
it will be great to hear when they do turn it on, then he can be a Dalek when he needs to.

and the brain wrapper is the Menges.
kitmizkit on May 9th, 2016 08:41 pm (UTC)
I actually knew the brain wrapper was the menges, but I was kind of following the "use the simplest words you can to describe this" theory for the writeup... :)
martianmooncrabmartianmooncrab on May 10th, 2016 04:01 am (UTC)
brain wrapper works, now I will look at that roll of Saran Wrap differently..grin.
(Deleted comment)
Karenklwilliams on May 9th, 2016 07:57 pm (UTC)
That's great news, both for your father but also for all the other people down the road that this technology with help.
TuftEarstuftears on May 9th, 2016 08:13 pm (UTC)
This is an awesome story! Congratulations on your father getting through what could have been a really harrowing surgery. I know I wouldn't have been half as relaxed.

Hope the tech works well!
Jeff Linderjslinder on May 9th, 2016 08:51 pm (UTC)
Wow, that's actually really incredible. May I ask that you keep us updated on how the process goes? Very interested here as this is something that probably would have helped my Mother in Law had it been available before she passed...
kitmizkit on May 9th, 2016 09:10 pm (UTC)
Yes, I absolutely will be doing updates over the next several months.

It's not a new operation, exactly, but it's definitely not widely known, either, as--due to this post--I've now spoken with several people who have essential tremors who've never heard of it. Apparently, though, the hospital where he got it done is known for leading-edge work, so we might have basically lucked out.

The specific tech they used is new--the 3-pronged wires, the App For That; previously they used single-tipped wires and a computer-based program for the control, and as far as I can tell it used to be that if they needed to upgrade the hardware they actually had to do the operation again. Now they can essentially do a firmware upgrade (#boggle) with the app, but they've been doing surgery of this nature for about 20 years now, I guess.
Jeff Linderjslinder on May 9th, 2016 10:43 pm (UTC)
It was the need to possibly redo the surgery to update that made it impractical back then (surgery would have been very difficult for a number of reasons, doing it twice or more was not an option....)

kitmizkit on May 10th, 2016 06:09 am (UTC)
Yeah, I can totally understand that. It's a huge enough thing once. Twice is just...yeah.
silkiemom on May 9th, 2016 10:42 pm (UTC)
Yay for science! I hope everything continues to go well for him.
leecetheartistleecetheartist on May 10th, 2016 07:27 am (UTC)
I love living in the future when these procedures can radically change quality of life.

Thank you and your dad for sharing!
Amberleyamberley on May 10th, 2016 08:47 am (UTC)
Yay!
I'm delighted to hear it went well. Hurrah for science! 3 Hurrahs for your Dad and his surgical team.
Alix (Tersa): Vinnie (tersa)tersa on May 10th, 2016 03:07 pm (UTC)
*cheers!*