Intractable Excerpt

INTRACTABLE

Preface

         This is a true story that has evolved over the past six years.  The names of everyone in this story have been changed, or are referred to only with initials. 

Peter, in this story, is my husband.  When choosing names for the people mentioned in this book, I specifically selected the name Peter for him because it means “Rock”.  Once you have read this story, you will know why I made that selection. 

     To all friends and family who contributed to this book, thanks from the bottom of our hearts.  Special thanks to JK for her editing insight.

     This story is dedicated to my husband and to our sons.  It never would have been written without their contributions, especially “Peter’s”. 

Chapter 1

     “Remember the block.  Remember the block,” the neurologist said in a monotone voice, as she showed Peter the building block and then placed it in the cardboard box.  “Remember the baby.  Remember the baby,” she instructed as she held up a child’s small doll and then returned it to the cardboard box, together with a dozen other well known every day items.  She displayed each item in the box in a similar manner, as she prepared Peter for the Wada (WAH-dah) test she would administer.  This test is given to epileptics to determine where speech and memory are stored on each side of the brain, usually in preparation for surgery.  Peter concentrated on each item as it was shown to him, and he filed its identity away in his memory.  He thought, “This isn’t so hard.  I know what these objects are.” 

An hour later Peter was wheeled to the test center, and he was prepped for the procedure.  His head was placed into a vice to prevent movement.  A catheter was inserted into his femoral artery in his groin and snaked through his body to the internal carotid artery in his neck.  At the start of the test, the catheter would be moved into the right hemisphere of Peter’s brain where sodium amytal would be injected to put that side of his brain to sleep.  Once asleep, that hemisphere would not be able to communicate with the left hemisphere of his brain, and the common every day objects would be shown to Peter for identification.  The effects of the sodium amytal would wear off quickly and the catheter would be lowered slowly from the right hemisphere down to his neck where it would then be passed up and into Peter’s left hemisphere through the carotid artery.  Sodium amytal would again be injected and the steps repeated.

When the test was begun, and Peter’s right hemisphere was injected, the left hemisphere was able to process the information.  Peter identified the items that were shown to him.  When his left hemisphere was injected and his right hemisphere processed the information, the items from the box, once again, were removed one at a time, and Peter was asked to identify each item.  He struggled to remember whether or not he had seen the items before, and if he could remember the name of the items.  Quite often, he felt as though he knew what the objects were, but he couldn’t remember the words for them.  At times, when he did remember the words, he wasn’t able to say them.  Once the effects of the sodium amytal wore off, Peter’s memory returned. 

The Wada test was one of the final tests given to Peter in his long road to treatment for intractable epilepsy.  When I first heard the word “intractable” used, I had no idea what it meant.  It sounded like a powerful word, I thought similar to other “in------able” words I knew, such as:  insatiable, inimitable or invaluable. 

I removed “Big Red” from the shelf and thumbed through it.  This is my children’s nickname for our three inch thick American Heritage Dictionary that I keep in my office.  I searched for the definition of the word, and found it to mean difficult to manage, difficult to cure – which made perfect sense in the context it was used.  Our neurologist might as well have said insolvable or inexplicable.  All these words describe my husband’s medical condition. 

Peter has right temporal lobe epilepsy and it was classified as intractable – unmanageable and not controlled by medication.  According to the Epilepsy Foundation, three million people in the United States have epilepsy and seizures; there are 200,000 new epilepsy cases per year; and ten percent of new epilepsy patients fail to gain control of their seizures.   Peter fell into that ten percent category. 

We didn’t know how he got it or what caused it.  We were told by his doctor to stop looking for a cause or trigger because we would never find one, as is typically the case when adults begin to have seizures. 

When I decided to write this book, I couldn’t remember when the seizures began.  It seemed like decades had passed, because it disrupted our lives so much.  I created a timeline to put everything into perspective.  My best guess is that Peter’s health issues began around 2002, when he started to complain of strange feelings in the pit of his stomach.  They came over him in waves and then went away after several seconds.  Most of the time, these feelings occurred when he was eating.

  Initially, we took a “wait and see” approach.  After the feelings continued for months and progressed to what we later learned were simple partial and eventual complex partial seizures, I made an appointment for him to see his physician.  The appointment was the first of many, and the beginning of several years of medication trials and medical procedures.  His treatment spanned two states, included primary care doctors, neurologists, neurosurgeons and specialists.  Finally, in 2007 we were able to get answers to our questions.  This is our story.