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Brain Surgery for Epilepsy

Jul 29, 2010 - 11 comments
Tags:

epilepsy

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corpus callostomy

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Brain surgery

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seizures



My nephew Alex is 6 years old and has suffered terribly with epilepsy since before two years of age.  There were some odd signs that something was amiss since the day he was born.  He would occasionally "space out" for a few seconds and then go back to being his typically curious and active self.  No harm done.  The pediatrician thought nothing of it so life went on.

Just before he turned 2, a rash of grand mal seizures struck.  He was hospitalized for two weeks with uncontrollable and constant seizure activity.  I can't even count the number of times he's had to be an inpatient.  This poor kid's body and mind have been ravaged by seizures and medication so badly that his physical and mental growth have been noticeably retarded.  Even worse, his seizures include drop attacks.  They hit with no warning whatsoever and the risk of physical injury is high.  Through it all, Alex has remained Alex and he takes it all in stride.  His sunny personality is fully intact and he still gets into the usual trouble that little boys get into.

The doctors have tried meds, a vagus nerve stimulator and protective devices such as a helmet to deal with the drop attacks.  EEG testing shows constant, generalized seizures so there is still no telling exactly what area of the brain is shorting out.  There was some improvement with meds a couple years ago, but now even meds aren't slowing the seizures.  I can't tell you how heartbreaking it is to see what epilepsy and meds both have done to this child.

The only hope left for Alex to live a normal life is brain surgery called a corpus callostomy.  The surgeon will sever the corpus callosum which is the area of the brain that allows the two halves to communicate.  About 10% of patients are cured outright with another 25% showing significant improvement.  Results vary for the remainder, but most patients have less severe seizures since only one half of the brain remains affected.  A second surgery may be necessary if followup EEGs can identify the specific source of the brain in which the seizures reside.

He'll be in the hospital for at least 3 days.  If the surgery results in physical stroke-like symptoms, he'll have to stay in the hospital for a few weeks of rehab.  I understand this surgery is only performed on young children while it is still possible for the two brain hemispheres to learn to communicate through the cerebral cortex.  That process apparently does not occur in teens or adults, so Alex is up against a time limit.  It's now or never.

This little boy has suffered so much in his short life and the decision to do the surgery has been agonizing for his parents.  Please keep Alex in your prayers for a successful outcome of this surgery on August 2.  

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by dominosarah, Jul 29, 2010
I am so sorry to hear about your nephew.  This is heartbreaking.  I hope and pray this surgery will be a success.  Neurosurgeons are a highly skilled and the best of the best.  The one who did my dads brain surgery was simply a godsend to us.  You are all in my thoughts and prayers~~~~~~sara

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by opus88, Jul 29, 2010
aww the poor little guy, its so hard to see them go through such events when they are so young and we feel so helpless.
I really don't know anything about the surgery you describe except that I do know a neighbor boy who under went the same or similar procedure about 10 yrs ago, he was abt 12 at the time. As far as I remember he had a significant reduction in his seizures, they were grand mal and he was having several each day at school.
I wish the little guy all the best of luck and prayers.
Opus  

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by namnam46, Jul 29, 2010
My Dear Jennifer,

Alex and your ENTIRE Family are in My Thoughts and Prayers!!! I'm here for you!!


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by melissaky, Jul 29, 2010
Jennifer I will keep your precious nephew in my prayers I hope it is successful and he goes on to have a  happy pain free , seizure free life .It is so sad to see young people suffer this way .
Take care
Melissa

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by ginger899, Aug 02, 2010
Poor little boy!
He is in my thoughts and prayers. (I stumbled across your journal entry a bit late in the day)....but all I can hope is that he will have a successful outcome. He sounds like a lovely character. God bless him and his parents at such a hard time.

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by Jaybay, Aug 03, 2010
So far so good!  Alex sailed through the day yesterday with his usual grace and humor.  He was laughing and giggling in pre-op with no fear whatsoever, and fully aware that the doctors were going to be looking and poking around inside his head.  That kid has always been fearless but this?!  

My brother learned something both interesting and alarming while speaking with the surgical nurse in pre-op.  She casually mentioned that my nephew has a chiari malformation.  This is the first time he's heard those words in all these years.  That could well be the reason for the seizures, or at least a serious contributing factor.  If so, we want to know what doctor knew what and when and why nobody ever said a word.  That kid may have been needlessly suffering for years and suffered irreparable mental retardation as a result.  Unbelievable.  Just more anecdotal evidence that illustrates the importance of obtaining copies of medical records for personal review.  That includes surgical reports, imaging study reports, pathology reports, lab reports - you name it, I've got it.

My little nephew was in ICU last night for observation, but was he was smiling, drinking apple juice and asking to watch his favorite cartoon as soon as he arrived. My brother reports that he doesn't seem to be in any particular discomfort.  Whoo hooo!  Time will tell just how effective the result will be, and if there is any related motor skill impairment requiring rehab.  

That boy is just amazing.  When I think of the times I've freaked out over one surgery or another I could hide my head in shame.  I need to take a page from his book and learn to go with the flow.  :-)

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by namnam46, Aug 17, 2010
I was wondering how your Sweet little Nephew, Alex, is doing now that he's had a few weeks for recovery.

I'm hoping that everything is going along Beautifully and he's playing and happy and MOST importantly Pain Free and Seizure Free!!!

I'm STILL keeping you and your Family and OF COURSE, Alex in my Prayers!!!!

Best wishes to you all............Mama Sherry

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by Sarajmt, Aug 17, 2010
I truly hope he comes through with flying colors!  Maybe this will be his miracle.  It's horrible that your nephew went that long with knowing everything.  The parents must be a bit upset over that.  Hopefully his full recovery will make up for all that.

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by Jaybay, Aug 17, 2010
Sorry about the delay in updating - you know how "real life" gets sometimes.  :-D

Alex sailed through this surgery with his usual charm and grace.  He has only a very slight "disconnect" that shows up as weakness on the left side and a bit of a lopsided smile.  If you didn't know him, you'd never notice it.  The docs feel it should clear up just fine in a few weeks.

Meanwhile... NO SEIZURES!!!  He had only a couple of very minor seizures the first night post-op and that was IT.  You don't know what a miracle this has been for this kid.  He is one of three boys, and was always the most active and inquisitive of the bunch.  To watch his mental and physical self slowly crumble away for the past 4 years has been horribly painful.  Some of the deterioration was due to the seizures; the rest from the onslaught of medications thrown at his brain.  I don't know if the docs have yet begun to wean him off the meds, but that's something that will take quite a while.  At least we can all celebrate this terrific news and he can go off to school with his brother in a couple more weeks.  So how's that for a great big PRAISE?!  WHOOO HOOOOO!!!!  :-D

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by namnam46, Aug 17, 2010
Oh Jennifer -

God has DEFINITELY Blessed you and your Family!!    What a WONDERFUL Miracle the Surgeon's have performed for  your Sweet Alex.  

This is one of those Stories that you see on TV and you sit there with your Tissues having a JOYFUL Cry!!!  At least I do!

I'm VERY Happy for you Family AND especially for Alex.  This has put a smile on my Face for the ENTIRE Day.



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by Rajan_chemate, Jun 24, 2014
Hi,
My doughter 7 year old also suffering from same problem some what, please let me know more  because she is something on relief now a days.


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