My Experience With Deep Brain Stimulation

I have not spent a lot of time discussing Deep Brain Stimulation, or how it has affected my lifestyle. The reason for this is simple. I'm not quite sure I am qualified. Yes, I was the one that endured the hours of surgery, and yes, I was the one who dealt with all the unknowns that brain surgery brings to bear. But DBS is a complicated eight step procedure that even a healthy brain has a hard time grasping. But since this surgery is apparently a hot topic in the world of Parkinsons Disease research, I will give it my best shot, hoping for an interesting and informative read.

From the outset I want to make it clear that I don't consider myself much of an author, so the flow of this piece may be a little choppy and certainly not very well written. But if you bear with me, I may be just good enough to get the letters to form the words, the words to form the sentences and the sentences to form the paragraphs needed to carry this message and convey these ideas. I guess its worth a try...

By the way this will be served with just a taste of humor...

One of the first things that bothered me about DBS was the fact that the first surgery was performed, not on me, but on a laptop computer. Not on lab rats, space monkeys or even crash pad dummies, but a freeking laptop. That's sounds like a practice swing to me. Also, laptop computers can't talk, except in a computerized sounding voice way to hard to understand. So how do docs interact with something that doesn't know what interact means...

It was all a big mess...

This was my first visit to a hospital, so I was understandably nervous. I learned quickly that 'nerves and needles' don't mix. I should have seen it as a sign of things to come, when my initial iv took four jabs to take and nurses started laying odds on just how many 'sticks' would be needed in order to finally put this thing to rest.

All surgeries take place at The Medical University of South Carolina. Tuesday mornings of each week are set aside for DBS procedures. These surgeries can begin so early that even the roosters have not yet stirred. So at five in the morning a host of hospital personnel arrived to escort me downstairs to begin this painful ordeal. Once downstairs activities begin.

GETTING FITTED FOR HEADGEAR

It starts with an MRI that I'm not real excited about. This is followed by a CT Scan, and then, just when I thought I may duck the most painful parts, out come the power tools. An electric drill is good for a lot of things, but one thing it is not good for is drilling though the human skull (especially with me still in it). You will never convince me otherwise, regardless of how hard you try. To add insult to injury the doc doesn't think one time is enough, so he proceeds to drill four holes in strategic locations around my head.

Doesn't This look Comfortable???

More comes later...

The drilling of these different locations around my head was done to hold my skull perfectly still for the surgery scheduled for a little later that morning. So with its completion I was taken back up to my room to await further abuse. The headgear was extremely uncomfortable, especially for the length of time I had to wear it. To make matters worse, friends of mine who had made the trip to show support, couldn't help but comment how much I resembled Hannabal Lector. Although, I was in no mood for bad humor, I played along attempting a smile for as long as I could hold it. However, what I was in the mood for was the stuff they were putting in that iv bag.

The morning seemed to drag on...

By ten o'clock, this same group of doctors and nurses arrived again for my escort down to the operating room. I was hoping for a tour of the hospital, but no such luck. One of the doctors explained I was going to a staging area, to get me ready for surgery. I was praying they would unscrew the headgear, but again, no such luck. Maybe, I thought, it was never coming off. But if not, since this was mid October, I had my costume and I was ready for Halloween. I was pretty scary looking!

So, I'm down in the staging area, waiting for God's knows what when I notice this middle age couple across the room. Since I really have nothing better to do, I start to eavesdrop on their conversation and in no time I surmise he is a Citadel grad. For some reason I found that to be very comforting, so I yell my 'hellos' from across the room. I was beginning feel no pain, but I do remember The Citadel Class of 1988. Even though our years were different, Citadel stories never change and alumni can always find that common ground and the ties that bind.

Go Time...

I don't remember everything real clearly after this point. I know they took him away first, and as I waited, for the first time I felt alone. Usually lonely moments are prayer moments, so I had my conversations with God, handed it all over to him and then just waited...

It is now out of my hands...

I really can't say at what point the drugs took hold but the next thing I remember was coming to and seeing the neurosurgeon staring down at me and asking how I felt. He then proceeded to say they needed to do some interactive work with me to make sure that all my implants were working properly. This was the part of the surgery were I was awake while they tweeked my connections to find the optimal settings. Everything was a blur, as I tried to answer all questions to the best of my ability. This lasted for about another hour. The good news was the pain was at a minimum and I felt good overall. But it was only later that I found out the reason that my head wasn't hurting. You see the brain is the only organ in the body that cannot feel it's own pain, and their must have been a lot of pain I was missing out on.

There must have been a time limit associated with this brain/pain thing, because it made up for it in recovery, showing up in abundance. So much so that I was given morphine to help me cope and within several hours was speaking to friends and well wishers from the recovery room. That morphine was good drugs.

Thank goodness my headgear was off...

So I spent several hours in recovery, minus the headgear. During this time the doctor came by to report all went well, and that the first of my two surgeries was complete. Remember, this was only one side of my brain, we still had another left to go.

I left the hospital the next afternoon, all wrapped up like a Christmas present. I was eager to get home and sleep in my own bed. As we headed up I-26 I felt good knowing I had survived another day, but apprehensive about tempting fate to many more times

5 Replies

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  • Jeff,

    Thanks for your various postings on the site recently. They're mostly long, but worth it.

    I was especially interested in your DBS experience, because my neurologist told me that I'd likely be a candidate for that. You did talk here about what the operation experience was like. What about benefits/drawbacks regarding your PD as a result of the operation? You still have the other side yet to do, so maybe it's too early for any solid conclusions.

    I lot of people here who've had DBS say it has helped significantly and was worth it. That's good to hear. And, of,course, I wish you good luck with the other side and in general with the PD.

    Paul

  • Thanks for your comment. For more writings of my dealing with PD and other inspiration stories, please check out my blog @ elcid82.blogspot.com

  • Thanks, Jeff. I've signed up for your blog's emailed updates, and will be returning to your blog soon.

  • I am beginnning evaluations in late January.

    I have had PD since 1995.

    I will keep your comments in mind.

    Thank you.

  • Thanks for your comment. For more writings of my dealing with PD and other inspiration stories, please check out my blog @ elcid82.blogspot.com

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