Thursday, August 1, 2013

The surreality of elective Brain Surgery

I am now less than a week from having my first surgery to implant the DBS.  The first surgery will be on Wednesday, August 7th.  I will be having the electrodes implanted on only my left side.  The reason for this is twofold.

  1. It's considered safer and less stressful to the patient (me) to do one side at a time. This is according to both my neurologist and neurosurgeon.  They feel I'll have a faster recovery and will be able to get a great deal of benefit out of the one set on my left side, while minimizing the risk of complications.  They both know I work full time and need to be able to get back to work, so this came into part of the discussions.
  2. Currently, most of my symptoms are on my right side (thus surgery on the left side of my brain).  While my left side is starting to see some symptoms (it is mostly gait related), the doctors feel that I will most benefit from the one side and hopefully have some crossover effect for anything on the left side of my body.
Nevertheless, both doctors said, if I need the other side to get electrodes placed, I'll be able to get it whether it is 6 months or 6 years from now.  

I had an MRI last week that took approximately an hour.  If you've ever had an MRI, you understand that it is best not to be claustrophobic (I'm not), able to stand still (I timed my meds for this) and basically relax and go with the flow.  I was very happy to have good music playing during most of the procedure (the tech forgot to restart the music after he injected me with the contrast material for the last 10 minutes).  My wife recently had an MRI and the tech automatically put in classical to "relax" her.  He obviously does not know my wife.  The tech at this facility asked me my musical taste and when Nirvana - Smells Like Teen Spirit came on as the first song, I knew I was in good hands.

Getting to the title of this post, it is weird to think that I'm basically sitting at work or at home with the family doing typical, everyday things and in about a week I'll be going in for brain surgery, by choice.  It's not something you ever think you'll do.  I always thought of surgery as something you do because you have to and while I feel this will greatly improve my quality of life, it is still a choice that I and my wife made by ourselves.  We had input from doctors, but the ultimate decision was my own.  I know even in heart surgery we make that decision (we've made that decision many times for many issues with my daughter); however, except for her surgeries to correct her cleft lip, it was never really a choice, it was have this procedure or she will die.  The lip surgery is so different because it is cosmetic, not the internal function of an organ, let alone the brain.  It's so unreal that I am doing this surgery, yet I can't wait.

A friend told me the other day that he can tell I'm ready for this, and I am.  My wife as well.  She basically told me she hates watching me suffer, which is correct on so many levels.  Watch videos of people with Parkinson's when their meds kick in or they turn on their DBS.  Without a doubt, there is typically a sigh when the symptoms are relieved.  That is because besides the obvious pain in the ass part of the tremors, dystonia, gait issues, etc. Parkinson's Disease is exhausting, even without the insomnia that most people with Parkinson's have.  When my meds go on in the morning about 45 minutes after I take them, it is one of the happiest points in my day.  It sounds sad, but the fact is, getting around with a severe tremor and gait issues is just exhausting.  There is such a relief that it is actually hard to describe.  The fact that I will have more on time with the DBS and will hopefully wake up in the morning on, without the need for the meds to kick in, is such a mind-numbingly awesome notion that I cannot wait for all the surgeries to be over and my programming session to start.

Speaking of programming, a little aside.  I have great friends.  Most of the guys I hang out with that are not from my Synagogue were hired on at my first company the same year I was hired in 1993.  We basically all came to San Diego together and made our lives here.  All but one is still at that company since I left in February, but we all got together for a barbeque the other day to catch up and let everyone know what's going on.  Like any good group of engineers, they were curious about the actual device that will be implanted.  I don't know a lot, but know it is programmable via a remote control device that you place next to your chest.  Needless to say, this got them going on whether they could hack the device, and start messing with my brain and setting up websites to "Control the guy with YOPD."  This is why I like my friends, they do not suffer from poor you, I'm so sorry.  If they did, I'd go nuts.  They want me to get better and use the full potential of this opportunity whatever it might be.  This is also how I know I made the right move to switch companies, because my boss asked whether I'd be able to hack the remote as well. 

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