Updated: Aug 15, 2018
It's somewhat strange to think about. Right now, I have two wires implanted deep within my brain; I can feel the wires that are coming out of my brain under my scalp (since I haven't had the neurostimulator installed); yet I don't feel or sense the wires inside my brain at all! I know the brain doesn't have any 'pain' nerves in the first place, so it doesn't feel pain. It's just... well, weird to think about!
But I did have my first surgery completed on March 10, and although I don't have the full 'electric' brain per se, it is partially wired! But I am almost fully healed from that first surgery, and will get these darn itchy staples out and my neurotransmitter implanted tomorrow (Friday)! And then exactly one week later I meet with my neurologist and have the whole thing turned on for the first time!
I've begun to wonder, though: Does all this make me a 'cyborg'? Well, the definition of a cyborg is:
"...a being with both organic and biomechatronic body parts. ... it applies to an organism that has restored function or enhanced abilities due to the integration of some artificial component or technology that relies on some sort of feedback" (Wikipedia)
I don't think I will have any 'enhanced' abilities (darn, there goes my superhero dreams out the window!) but this will - in a way - restore function due to the integration of technology. So... am I now a cyborg? Hmm...interesting thought... Maybe a subject to pursue in a future blog post! Or something for you viewers to discuss!
So How Did Surgery Go?
The whole operation went pretty much as I described in my previous Part 2 post. However, here are a few more interesting details that I experienced along the way.
After settling me into a room in the pre-op area, the first thing to be done, of course, was to attach the halo to my head. And I take it back - even an angel would never want to wear this halo! It was made of heavy metal, and as I mentioned previously, it was screwed into my skull via pins. It was, shall we say, rather uncomfortable. The worst part was when the physician's assistant (a very humorous guy, which was good because I was extremely nervous!) played the part of a 'dentist', as per Bill Cosby. A dentist, you say? Well, if you remember the last time you had a tooth worked on, and you had to have your mouth numbed, you know how the dentist does it, right? It isn't simply a quick stab with the needle, in with the numbing agent, and then out again... Oh no, it's in with the needle, then he moves it around while you writhe in pain in the chair and he does 'small talk'... Well in this case the same kind of thing was done. The needle was inserted into a hole in the halo where the pin would later be, jammed into my skull, and then moved around in order to circulate the local anesthetic around the area. Ugh, truly that was the worst part! Luckily, as I mentioned, the PA was a funny guy and helped keep my mind occupied (humorously) while this was going on. And the local was quick acting, so it only hurt badly for about 10 seconds then the pain was much less.
Once all the areas where the pins were to be placed was numbed up, the 'halo' was securely attached via metal pins. I know they were screwed into my skull because... well, I could 'hear' them going into the bone (not for the faint of heart). But by that time I didn't feel much pain, and within 5 minutes I didn't feel any pain at all, just pressure and the weight of the unit on my head. The PA then told me that when they do remove it afterwards, it will still 'feel' like I have it on for about an hour. And sure enough, when it did come off, it still felt like it was there!
Oh and they did give me a 'sucker' - that green thing in the picture above - actually a foam sucker with water to relieve my dry mouth... The only liquid I was allowed at that time!
Brain Surgery Time!
I had a CAT scan with that contrapted halo on my head, then
into the OR I went. Unlike most ORs I've seen on TV (remember this was my first time into an operating room!) this one was slightly different in that it was filled with a lot of tech - computers, monitors with my brain image on it, etc.
Once I got settled on the table and the halo attached to it, the surgeon began attaching all kinds of 'parts' to the halo. I knew this was going to happen because he had used the MRI and CAT scan done previously to 'map' my brain in order to know exactly where to go with the probes.
When that was complete, he numbed the area on my head, made the incision (which I could 'feel' but not pain-wise) and then he asked someone in the room for the coordinates. A girl somewhere in the back (obviously on a computer) called out a series of coordinates and the surgeon moved the equipment around on my head (setting those coordinates on my halo). Then, as I had expected, he told the anesthesiologist to give me the sodium - i.e. Sodium Pentothal. I began to feel a warm feeling come over me, and then suddenly it seemed as though i was in a dream state - aware but not caring about anything! (The anesthesiologist said later he knew I went under because he saw my eyes roll back in my head!) I do vaguely remember hearing the drill, and feeling the vibration from it - but as I said, I could have been run over by a Mac truck at that time and I could have cared less! I was in la-la land.
Into the Brain
I don't remember much for the next however many minutes it was, but the thing I do remember is someone starting a countdown - like 5, 4, 3.5, 3, 2.5...0, -1, -1.5. I realized then that they were inserting the probe into my brain and that countdown was most likely reflecting the distance they had to go to the target! And each time they stopped, a static noise was played on a speaker in the room. That was my brain singing! In other words, the sound of my neurons firing at the point where the probe was. He knew right where the STN (subthalamic nucleus) was at by the mapping and the sound my brain made.
Once in place, I do remember him saying something like, "OK wake him up". I then remember coming back to consciousness (like coming out of a dream), and the PA was standing there with a little hand-held machine - with a wire coming out of it and going around to the back of my head. That was the wire going into my brain! He then turned 'on' the current to make sure the wire was in the right place. He tried a number of settings, all the way from 1 to 5 - I really couldn't tell myself if I felt any different - remember I have no tremor and the drugs given previously had relaxed my poor cramped up feet. But he checked my movement by moving my arm and legs around, and he noticed they they were much more relaxed than before. So we knew the wire was in the right spot!
Then the surgeon switched to the other side and pretty much the same procedure was done - except this time the sodium worked well enough that I don't remember the drilling at all. I do remember them waking me up, and the faces of the folks around me were clear, but looking at the clock I saw double-vision. We were not sure why but personally I think it was the drugs affecting my vision. Anyway, the PA did the same thing and settled upon a certain number (which I assume may be the 'starting' point for my neurologist). If I remember right, it was something like 3.5-4 for the right brain hemisphere (left side of body) and 2.5 to 3 for the left brain hemisphere.
And there is a story around the clock in the room - it was crooked on the wall. I mentioned this to the PA, who sighed and said that everyone notices that, and that someday they'll have to get that fixed. Personally, I think they made it that way themselves in order to keep the person having the brain surgery thinking about the crooked clock rather than the surgery itself. But don't tell them I figured out their little plan! ;-)
I then heard (rather than felt) the surgeon 'rivet' (for lack of a better term) the plastic cap over the dime-sized hole in my skull; then shortly afterward about 12-14 staples on each side of my head. Bandages were placed, the halo was removed and those spots covered with band-aids, and that was it! All done by 9am (I went in at 7:30am), and according to them, one of the easiest and quickest procedures he had done in a while! I was glad to cooperate (as though I had no choice in the matter).
As I was wheeled to my room my family met me, and once there we all talked about what had happened and how it went. By 10am I was getting really tired and sleepy. The rest of the day I spent eating (not too bad food, I have to say), and getting poked and prodded by the nurses. And everyone who knows me knows that I am a rebel (just another word for stubborn) and don't listen to commands that well - like most of my family, I have 'selective' hearing (ha!); so even though I was on 'standby' (which meant I shouldn't be out of bed unless one of the nurses was with me) I was up and walking around that afternoon and the next morning by myself - even got a small scolding from my Saturday AM nurse for getting up and walking around with no one there. (Oh what a rebel I am!!)
And sure enough, by that Saturday morning I had the 'honeymoon' effect that I talked about previously in my other post - where post-surgery one basically has most of their PD symptoms go away. This is due to the brain swelling slightly around the wires, and the 'microlesions' produced by the wires going into the brain. They had told me that if this occurs it will only last a couple of days; and sure enough, by Tuesday afternoon my symptoms began coming back. But what a glorious two days it was, with no PD symptoms!
And that's pretty much how things went - in reality, it was not as bad as it sounded at first, and a big thanks to the staff, doctors and nurses who helped keep me calm during the whole procedure. Yes, the staples itch; my head itched intensely for two days afterward because I had a hard time washing out the medical 'mousse' they used to keep my hair back during surgery (yuk); and on Wednesday I had a small scare because I noticed that morning my right eyelid was 'droopy' - I called in to the surgeon's office and was told that was 'normal' - most likely due to swelling - and should go away. And they were correct, by the next day the droopiness was gone! But all in all, the procedure went by pretty quickly and wasn't nearly as bad as I thought it would be!
One Down, One to Go
So that completed surgery #1. And #2, the implantation of the neurostimulator, occurs tomorrow. And then the following Friday, they will turn on the unit! It's then we shall see what we shall see, or as I like to again quote Charlie Brown, "It's Sydney or the bush!"
I will have one more entry in this DBS series, once I get the stimulator put in, turned on and tuned up a bit. I will then let you know the final result - with the hope that by having an 'electric' brain my PD motor symptoms will be greatly reduced.
In the meantime, life goes on. Make sure you enjoy every minute of it - I know I will, especially if all this hardware makes a difference! And thanks to everyone for their thoughts and prayers. Talk to you again in the next few weeks!