During my life, I have had very few connections with hospitals. Generally speaking, I have remained pretty healthy throughout my years and other than a few run-ins with hospitals in New Guinea from malaria and a brief encounter with a rather large horse back in the States I sort of assumed that I would go out the way I came in– with a slap on the butt and a short goodbye but I never saw myself connected with a hospital in the process. Until my Parkinson‘s was diagnosed, I was content to let it remain that way. In the last few years as my Parkinson’s symptoms progressed that changed, especially when I found out about the possibilities involved with DBS
DBS or Deep Brain Stimulation has become almost “the response” to those of us who have a severe problem with Parkinson’s. The Neurosurgeons (NS) are very strongly recommending this procedure because it offers the opportunity for anyone faced with Parkinson’s to have something done at an early stage if your situation allows. At one time the DBS procedure was done more as a last resort type of thing and not really available to everyone. I began to check out the Web for additional information but found little to soothe my concerns about the actual surgical process. At the point it was determined I was a candidate for the procedure, I decided to try and provide a closer look at the surgical process involved with DBS and record my impressions to keep myself informed about what had just happened. I also wanted to offer any help I could to others about to undergo the procedure (to help enhance their understanding of what they were getting into). This type of surgery requires the patient to be awake and able to respond in some intelligent fashion, and it was the unknown part of “being awake” while someone “screws” open my head that bothered me. I found a few things describing the DBS surgery on the web, but nothing that went into much detail about the actual process and immediate outcomes.
Since my PhD is in Anthropology, I decided to do a short description of my experience. A “good” ethnographic description would have few if any evaluative statements, but you’ll have to put up with these comments here and there – that’s just me. Here is my short description of the day of my surgery. This is a compilation of two separate days that takes the two surgeries scheduled for insertion of the electrodes and combines them for easier description;
I do have a warning. The following is pretty specific about what is going to happen and what does happen, so if you had rather not know then I suggest you turn back now and read no further. If you are curious, and want to know what people are doing to your body, then read on….
There appears to be a slight difference between the pre-surgical get-together and the Pre-op-get- together. The Pre-Surgical meetings began right after I was accepted as a candidate and were more unofficial and seemed directed at giving us the opportunity to be informed about what the procedures were and scary potential outcomes. Pre-Op on the other hand seemed to have two parts to it. Part one was admission to the hospital — signing forms, making sure I was me, and how this process was going to be paid for. Part two was the part where everyone stuck you with a needle for some reason or another.
Although I went through several pre-surgery procedures at the office of the assistant to my NS, I felt unsatisfied; not with the person who was answering my questions, but from my inability to know exactly what to ask to determine the actual process and possible time lengths of some activities. To the credit of the people involved in the pre-surgery briefing, they were willing to tackle any concerns that I had; I just wasn’t exactly sure what to ask about specific things. For example, how long does it take to drill through the human skull? I felt uncomfortable asking the rather simple questions. Or, perhaps I should say, asking what would appear to them to be ‘trite” questions, but were things I wanted to know.
We (my daughter, my wife and I) were at the hospital at 5:45 in the morning with a temperature outside below freezing. We made our way (and that term, “we” is used loosely, because I had been off of my Parkinson meds for 24 hours and was not able to do much more than point myself in the direction I wanted to go, and hope that the good Lord in his wisdom (or my wife) would kick me in the ass some time that morning and I could begin to “make my way) to the 2nd floor and surgical pre-op preparations. Fortunately, my wife was able to scrounge up a wheelchair inside the building and we were off. By the way, if you are thinking of going through this procedure two family members are useful to support each other while you are in surgery, or before as needed.
At check-in I was soon at work filling out the Part one forms and quickly added the form appointing my wife and daughter with medical power of attorney, a living will and a form that indicated what to do with my various body parts in the event that things had not worked out the way I had planned (you never know). The wait was short before we were invited back to the pre-op section by my nurse and asked to undress and hop into the bed — where I stayed for the next 3 hours waiting for the NS. I began to feel like I had flunked pre-op because everyone who had come in after me as well as before me was wheeled out and taken to surgery or put somewhere else. The only reason I even mention this is because things don’t always go as planned with most anything and surgery, however, efficient everyone looks, is no exception…things can happen to delay the best laid plains.
It turned out that the NS had determined that my neurologist (NR) was unable to be available before 10:00 am, so he did not wish to have me put on my halo, as it is called, and wait 3 hours for her to arrive. I appreciated that, because the “halo,” was not the most comfortable piece of equipment to wear. The delay made me nervous nonetheless. In the meantime, several people came by and introduced themselves. As the clock approached 8:45 there was more movement and it became a little bit like “welcome wagon” time when all the participants came and identified themselves — resident doctors in neurology, the two doctors or nurses involved with anesthia, the head operating room nurse. And one or two others I can’t remember.
Around 9:00 am my NS came in, and introduced himself again (We had met previously at the pre-surgery meeting) but if he had not introduced himself I would not have recognized him. It just points to the fact that I was nervous and too focused on what was going on rather than who was doing it. He looked ten years younger standing up.
He very calmly and nicely explained what he was going to do with the ‘helmet-halo” I was going to be wearing and which he was holding like a coveted crown. He then, asked me which side I wanted to start with and, after deciding, used his pen and sort of marked an X on the spot of my head enabling him to start at the right point. After waiting a few more minutes, (I think to see whether I was going to change my mind and go running down the aisle or stay) he and the resident NS began to put the darn thing on my head using two rubber-like side plugs in my ears to line up the “helmet” with my head. The ear connections were only temporary, since the four screws on the helmet were slowly screwed into my skull to solidify the helmet. A small amount of anesthetic was needled into my head at the places where the screws were to attach, and really, I have to say the whole darn thing felt somewhat like a football helmet and was not really that uncomfortable. I had worn football helmets that were a lot tighter and much more uncomfortable. So my first experience was a good one, although it was lost in the anticipation of the unknown that was coming. Mystery number one had been resolved. I should note here, that the second time I went through this procedure the “halo” did not end up being as comfortable as the first time, but I suspect that is part of human variation rather than anything else. The previous use of my head for screwing in the contraption, probably also had something to do with it as well.
When the helmet was secure, I was taken down to the floor containing the CAT scan equipment. I was still able to move myself from one table to another, which I believe they appreciated, since I weigh close to 200 lbs and tend to bend the backs of anyone forced to lift me. The second time however, they insisted on moving me themselves, so it depends on who or what time you arrive as to the amount of flexibility allowed. There was a small contraption on the CAT scan sliding table that allowed them to place my head and still keep my “halo” on so they could get an image of my brain with the “halo” in place. This allows the NS, with the help of some special software, to study my brain, such as it was, to determine the best route for him to use when placing the electrode. After about 15 minutes in the CAT scan room, I was returned to the Pre-Op room. Ten minutes there and I was off to the OR.
The Operating Room
As they wheeled me into the OR, I was reminded somewhat of a downtown urban crosswalk. Everyone was doing something different and it seemed as though none of it was related to what they were there for. That feeling soon disappeared however, as people began to give me some recognition and call me by name, either Ken or Dr. Keller. They quickly began to look like a team and moved in ways that suggested they were doing their part of what had to be done to make things work professionally. I never quite determined how many people were actually in the operating room at any one time, but it seemed as though it could have been anywhere from 7 to 10. They quickly went to work and I felt someone begin to sort of shroud off the area of my head that would be the focus of their attention. The resident, I believe, numbed the area of my head where he would make the incision and, shortly after, began to make a small incision in my scalp that felt very strange, because they were not only cutting through my scalp, but they were going through my hair which seemed to have a strange feeling all of its own. After flapping that aside, the NS picked up the drill and within a matter of a few (2 or maybe 3 at most) seconds was through the skull. (Somehow, I had imagined the drilling taking something like 10 minutes to do, so was enormously pleased when it was zip and he was done). I am not exactly sure of the sequence of events here since I was given some happiness anesthetic, and I didn’t have a good sense of time. In any case, I could feel them sucking up, what I assume was blood, bone chips, or brain drool, one of the three, pretty much constantly from then on. Someone had also determined that the hole in my head was either too small or too whatever, and began to crunch some of my bone to make the hole a different shape than it was. That was perhaps, the strangest part of the whole surgery. It didn’t hurt, but it is not something I want to experience too often in my lifetime.
In the next 20 minutes or so (I guess), they had neatly moved the electrode down through my brain and began to play with the computer to determine if it was picking up the appropriate signals. My NR came over to my head and with some aplomb said hi and began to check her electronic hand-held whatever to find out if I or any of my body was responding to an increasing amount of current that she was amplifying or decreasing by amounts of 5% or so to determine how I reacted. It seemed that no news was good news in this case since after about 10 minutes or so she was satisfied.
At this juncture, we began the wrestling match of all wrestling matches and the NR began to take a part of my body and go through the old neurologist routine of moving different parts of your body to find out if they had the electrode in the right spot. After the traditional motions such as turning the light bulb etc.she would snap my wrists, arms and elbows, grab my toes, feet and legs and crank them around to determine my response on the computer screen. It was a constant movement of flex and extension, to help them see what was on the screen. I had trouble with the catheter at that time or at least felt I was having trouble, and was constantly feeling like I was wetting my pants. Since no one seemed to care, I figured I wouldn’t either. Somewhere around this point (after going through the process of waggling fingers, arms and feet about 4 or 5 times), my neurologist leaned over to me and in her charming Russian manner told me that everything was fine and they had got the electrode in the right place the first time. That was when it hit me that this process could have gone on for more hours, if they had to look for another route down to the bottom of the brain. In any case, I was done and they began to do the entire close up stuff that surgeons do in these situations and I began to feel some relief.
They told me at that point that they were going to put me to sleep, but I don’t think they did because I felt them remove the halo and seemed to be awake when they took me to Post OP but I couldn’t’ say for sure. (I think they had a different definition of sleep than I did.) From the start of the actual surgery to the end of it was three hours (it could have been up to six hours if they had not hit the correct spot I suspect). After Post-OP I spent the night in intensive care (and a 3:00 am CAT scan to check for bleeding) and went home the next morning.
One more thing before I finish. I had placed a bunch of music on my MP3 player so I did not have to listen to all the goings on in the OR, and as it turned out, my player did not work in OR because I buried things too deep in the player to get them back right away, and I didn’t have my glasses with me. In the recovery room when I discovered that I could play it, I found to my surprise that I did not like most of what I recorded, and found the selections I had carefully made on my MP3 annoying.. They were too harsh or too something to be at all helpful in allowing me to relax. In fact, most of them made me very irritable listening to them. So, in your future, if you have to go through such a thing pick music that would really relax you and avoid everything with an edge to it.
Ken Keller, Ph.D.
Dec 29, 2008