Overcoming obstacles with Optimism

In 2003, I underwent a right frontotemporoparietal craniotomy and anterior temporal lobectomy, hippocampectomy, as well as functional brain mapping to help combat the seizures that were creating numerous problems with my day-to-day life.  It simply came down to this: The surgeons needed to take part of my brain, or the seizures could take my life.

The surgery was a success…in my battle with epilepsy.  However, near the end of the procedure I had a stroke.  Even this particular event was a great success for me.  I learned some amazing skills when learning everything again for a second time.  The patience I developed for my children in learning new tasks was immense.  If they took extra time learning to button buttons, I completely understood.  I had recently learned that task myself; it was not as easy as it may appear!

So yes, I would have the surgery again if I knew the possible outcome.  For seven and a half years, I have lived a life free of seizures.  In 1988, I had my first “spell” in school.  Despite this complication, I had a full life and accomplished a lot.  Seizures were always there.  Since 2007, I have been free of all medications!  I no longer use something that regulates my seizure activity but then causes unavoidable, dreadful side-effects.  However, as thrilled as I am with my life currently, there are questions that have never been answered.  In part, it is these questions that have created my intense interest in the world of neuroscience research:

I remember a lot of my surgery.  Some of the memories are very vivid while others are foggy.  How can that be?  Why is it?  In October 2002, my seizures became so bad that memories were wiped away and never again retrieved.  Yet, surgeons went in and removed the brain tissue from that same area, and my memory became sharper?  I woke up when they were sawing into my skull.  I remember the odd sensation and knowing that it was not quite right, but also not minding.  I remember the sound of the saw and the dust that was being produced.  I remember wondering if I was bleeding and laughing out loud.  I told the doctor I have a whole new appreciation regarding the chalky taste of Pepto-Bismol.  They told me to relax, hold still and then talked to each other.  How do I remember that?  How do I remember the horrible, painfully loud sound of the retractor clicking and the feeling of my brain bouncing back and forth and back and forth?  I remember I thought of a Jell-O mold bouncing back and forth.  How do I remember feeling the aura before my first seizure and the person standing beside me saying, “Hold on Tara we are almost done.  Everything is going to be all right.”  Yet, I knew, I had the distinct feeling, that it was not going to be all right when I came out of the seizure.  How do I remember all of these thoughts even though I cannot remember being pregnant with my second child or her birth?

I understand that the stroke was in my thalamus.  I have regained most feeling on my left side.  In regaining sensations, why did it make the wind feel as if it were burning me when it blew against my arm and rain drops feel like needles going in through my bone for over a year?

How did this lobectomy with a CVA (stroke) in the thalamus result in a significant loss of sight?  Can the optic nerve reconnect from the damage that was done and provide complete eyesight ever again?  If so, will I be able to know my own children’s faces at that time?  Was prosopagnosia linked to my eyesight loss?

I joke often and tell people I had the brain surgery because doctors thought I was way too smart.  They wanted to equal me out with the rest of the population, so they took out a nice chunk of my brain.  As for now, I am grateful to the doctors for their help and someday, maybe with the help of great researchers, we will have these answers I am seeking.  Until then, I am so thankful for everything that I do have currently!

Update: My seizures did return April 18, 2011.  There is till no regret at all for having had the surgery to help ease my seizures.

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Comments on: "Missing Brain – Remaining Questions" (14)

  1. This is an incredible post, Tara. Your selective memories are so sharp. They couldn’t amputate your sense of humor!
    Perhaps someday — sooner rather than later? — you will get some answers to your questions.

    • Until then I will keep hoarding all the great memories my family and I are now building! 🙂 That is the benefit of losing so much. I now cherish and understand the importance of holding memories for as long as I can. It is a lesson I hope everyone can learn from my experience, so they won’t have to go through it. Hold tight to all the great memories you create!

  2. I agree with the above comment. Heer Hear! I do believe you are right…about the doctor’s leveling the playing field for the rest of us.
    I am great helping others in a time of crisis. I get a hang nail… and I am laid up for days. I give you so much credit. I should be so brave.
    Thanks for the lovely post.
    Barb

    • Barb,
      Thanks for stopping by! I am glad that you enjoyed this post. A hang nail or surgery in the head….we all have our own battles that affect us differently. I enjoy reading your blog and get the feeling you are quite a strong lady in your own sense!

      Tara

  3. We humans are FASCINATING wonders: biologically, cognitively, emotionally. So many questions, sometimes so few answers – and yet, we carry on (perhaps because the alternative is no fun). 🙂

    • Stef,
      No fun at all! Thanks for the Smile Kiddo comment on here!! 🙂

      Humans are fascinating. I can’t wait to see the discoveries that are yet to come about how we really work!

      Tara

  4. I admire your grace under pressure.
    I admire your smile above it all.
    I admire your faith through it all.
    🙂

  5. Tara
    I have something for you on my blog. Come over and check it out!
    Barb

  6. wow. what a story. what a life u have to live. so happy for your successes and i celebrate w u. i luv your perspective. keep on.

  7. literaryescape said:

    Hi,

    I just found your blog – I’m so impressed by your strength having gone through so much. I hope you get some of your questions answered soon! From my own personal experiences, I can empathize with how difficult it can be to not have memory of significant life events. I really admire your courage.

    – Michelle

  8. Michelle,

    Thank you for your very kind words! I am glad that you found my blog.

    My questions will all be answered in due time. Until then, I am just glad I have so many amazing blessings to treasure and hold onto each and every day. I hope you have found the same treasure I have recognized in losing significant life event memories: very little passes me by now without trying to hold onto to the moment and get the most from it that I possibly can.

    Tara

  9. […] I went to sleep one October night before my brain surgery, I remember having the first seizure.  During the postictal stage of the absence seizure, my […]

  10. […] am glad I took the time to record this event in my life.  Epilepsy surgery  had given me a reprieve from seizures for eight years.  This post was written the week following […]

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