Rocky Road, My Medical Journey

December 13th 2008

Rocky road, one of my favorite ice cream flavors.  Also a good way to describe the last three years of my life (as of the date of writing this).  You can say they have been the years of trial, tribulation, troubles, hard times, it matters not what you call them. They are the years  that tested me physically, emotionally, and spiritually in a way like no other in my life.  James tell us to “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance” (James 1:2-3).  Though difficult to learn, that is something I have learned is possible by learning to focus on Christ and what the Lord is doing while on the rocky road.

In the fall of 2005 I was managing a top volume store for a premiere retailer.  Earlier that year I had reached a major goal in my career and was working toward the next one and doing all the necessary things to get there.  Something was not right.  I began doing things not typical of myself, feeling dizzy, disoriented, and not having the normal energy I had that I needed to get through a retail day in the Christmas season as a manager.  Then I got disoriented while I was driving.  This sent me to the Dr. and begun what at the time I had no idea would become 3 years of medical testing and surgery.

My family doctor ran a few tests, I was sent to a neurologist, and within weeks I was off work it had gotten so bad.  December 4th 2005 I left work not to return again.  A career I loved, worked hard at, but could no longer do.  I was having several spells a day and symptoms were worsening and more symptoms were appearing.  The neurologist eventually told us “nothing was wrong neurologically” but had found what was a rare malformation in my head he said would not cause my symptoms. After doing some research, and talking to my family Dr.,  I saw a specialist for that condition in April of 2006, hundreds of miles from my home.  I had the appropriate test, and discovered that yes indeed this was causing at least several of my symptoms.  In May of 2006, after months of suffering symptoms that had caused me to sleep up to 16 hours a day, become non functioning, not be able to even clean my home, care for my 5 year old, or work, I had a decompression surgery for a Arnold Chiari Malformation.  The first of my brain surgeries.

I got some relief.  But my dizzy disorienting spells did not go away, as a matter of fact they got worse.  Unaware of what I was doing however, since others attributed my behavior to “brain surgery”, I was getting worse without even realizing it myself.  I began wandering, walking in circles, repeating words over and over, waving my arms and kicking my feet.  I was even getting out of bed at night.  Even my husband did not realize that this was something other then what I had experience prior to my decompression.  I had previously had an EEG and been told I was not having seizures.  Unfortunately this turned out not to be the case.  On December 16th 2006, 7 months after my decompression, I had a grand mal seizure in my sleep.  I was taken to the hospital and was then referred to a specialist in epilepsy.  She diagnosed me with complex partial seizure disorder, epilepsy, and said I had been having seizures for over a year.  By this point I was having 10-12 complex partial seizures per day.

After being treated with several different medications for 9 months, and having increased seizure activity while on meds, it was determined I had medically intractable epilepsy.  My best option for controlling my seizures was to determine if I was a surgical candidate.  I  begin the testing process, a long multiple test procedure to see if my seizure focus was in an area that could be surgically removed.  October of 2007 this procedure began with a 3 day stay in the hospital for 24 hour video EEG monitoring.  My seizures were narrowed to the right temporal lobe region, a lobe that can be surgically intervened on.  Then in November and December of 2o07 several more tests were performed to see if I was a candidate for the procedure, and if it was the temporal lobe that could be removed without effecting major functions.  All came back with results showing I was a candidate.  Keep in mind that during this entire time I was having multiple seizures every day, could not drive, clean my house, work, and was sleeping most of the time.  When I was awake I was not myself, with no energy, no ability to control what was happening, and no way to know if it would end.  Even surgery would only give me a 40% chance of never having another seizure again, and a 90% chance of a great reduction in seizures.

March 28th 2008 I had the second of 3 brain surgeries to place an inter cranial monitoring grid on my right temporal lobe.  This remained in place while I stayed in neuro ICU for 3 days to pinpoint the exact area to be removed, then on March 31st I had a right temporal lobectomy.  My right temporal lobe was removed because that was the focus of my seizures, the place where they originated from and then spread.  The third of my 3 brain surgeries in 2 1/2 years.

Since my surgery I still have minor complex partial seizures, but they come once every several weeks.  To me that is a complete success.  Yes I will most likely remain on strong medications for the rest of my life, small compared to what I have been through.  I have gone from a women who could not function, to someone who can now complete the daily needs of living.  Has it changed me, yes, am I different in some ways, yes.  But at the same time I am also now able to share what God was able to do for me through the rocky path.  I have said multiple times to several people that I would not want to go through it again except that I would not give it back because of what I have learned about God.  If that was the only way I could gain what I did in my relationship with God, and learn what I did about Him I never want to give back what I went through.

From small things like reminding me He was there when I was laying in an MRI tube scared  because scriptures came to my mind I had hidden in my heart, to big things like keeping promises over and over again, God has proven Himself faithful.  This rocky road of mine was a chance for God to place me on His Anvil and teach me that He is consistent, faithful, unchanging, and worthy of me giving Him whatever He asks of me.  In the end I realize that no matter what our circumstance, no matter what is on our path, God is not only there with us, He is using it to shape us on His Anvil and to prepare us for what is to come next.  My rocky road is going to be used for Gods glory because I am going to do whatever He asks of me.


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