August 15, 2013

Back to the surgery candidate process that I went through the end of 2012.  In December I was set to have a Neurocognitive Assessment.  I admit I must not have been paying close attention when I was told what that particular test would entail.  I had been told that I should arrive the night before.  I was to start the test first thing in the morning.  The process could take 4 to 6 hours – that was from the point of check in to being done and walking out the door.  Nothing painful.  No shots, blood, iv’s, nothing like that.  At that I tuned out I guess.  No pain, no hospital stay, perfect!  The word test is used so often and that is exactly what this Assessment was considered, a test.  Totally my fault for not asking questions.  I didn’t look further into it, read nothing about it on-line.  I really had no idea about what I was going to have to do.

My Mom and Dad came up so my Mom could drive me to UVA.  My husband had to work and my daughter was in school.  My Mom and I left early afternoon the day before the test and my Dad was going to get my daughter off the bus and on to dance.  All went as planned.  My Mom and I stayed in a hotel near the hospital so we would be close by the West Complex where my test was going to be done.

We were up early the next morning and headed over for my appointment.  I checked in and was then sent to the test area.  I was being tested in The Department of Psychiatry and Neruobehavioral Sciences.  All good right?  Lets face it though, when we hear Psychiatry it can be a little intimidating right?  I was told how long I should plan on being there and the gist was that I was going to be asked a shit load of questions.  I certainly could do that but at the same time I wasn’t sure how I felt about being analyzed.  Anyway, my Mom decided to head back to the hotel, no need for her to sit in a waiting room for approx. 4 hours.

I met with two Dr.’s who asked me several general questions and then explained a bit about their role in the surgical candidate process.  Side note, I am remembering all this info best I can.  So, my diagnosis had been given to them.  The approximate focal point of seizure activity had been given and they would ask a series of questions that would help determine my brain function.  Which side of my brain was functioning stronger and analyze my cognitive abilities.  Cognitive abilities being our brain based skills, these skills are broken down into various areas – I guess!  He was explaining very complex stuff to me but basically they were trying to find my strengths and weaknesses.  They determine all this by asking questions.  Repeat information, draw pictures and complete a computer test – to name a few.  He then said I could request a break whenever I needed.  I kinda chuckled and said ok.  He told me I may find it very frustrating and getting upset was normal.  The whole time I was thinking how the hell could it be so bad?

Within the first five minutes I realized what the Dr. meant.  Five minutes in and I wanted to the rip the paper out of the test administrators hand.  I had in no way prepared myself for this.  A brain assessment, no pain, no hospital stay – how bad could it be?  I was going to be in a room with this lady for 4 to 6 hours with her hammering shit at me.  Read me a story and then tell me to tell you everything I remember.  Lady I don’t remember if I had a muffin with my coffee and you want me to tell you multiple details of story?  What was the girl’s name in the story?  I don’t F’n know!!!  What was the horses name?  I don’t know, was there a horse in the story?  I was told to say as many words that start with the letter A but no names.  Then a second story.  Instead of me telling her what I remember she asks me if certain things were in the first story or the second.  The computer game was the worst!!  I failed.  No joke, I literally failed that test.  It was matching cards but in the middle of matching the game switched up what you were trying to match and it kept track of how long it took you to figure out the new pattern.  The peg game with one hand was not good either.  Anyway, that’s just the few things that stick out!  4 hours of that.  I was pissed when I left.  It was amazing how frustrated I was.

The outcome, based on the diagnoses they were given, the impairments that I have are what they expected.  My cognitive abilities are good.  I was better than average/good in verbal learning.  Unfortunately the area’s where I was down, I was bad.   My motor skills were down.  My right side is lower than average and my left side is impaired.  My executive functions also came down.  I was below average on a couple of the tests and my cognitive flexibility was just plain bad.  I was reminded that the Neuro/Psych Dept had been given a specific diagnosis.  The assessment they had given me was one more test in the surgery candidate process.   Their tests were to help give the Dr.’s confirmation of their findings.  Maybe a nice way of saying, honey don’t take the impairments and lower than average results in a bad way.

So to conclude this story and no longer re-live this, I am going to wrap up the surgery process.  I received a letter at the end of January 2013 from UVA.  The committee met about my case.  Currently they suspect that my seizures are most likely coming from the left side of my brain.  They suspect from my left frontal lobe, particularly from the malformation they’ve seen on my MRI.  They were not able to confirm that when they reviewed my seizures during the time of my hospital stay in August of 2012.  The next step is intracranial monitoring.  This would require wires being placed inside my head on the surface of my brain.  They’d be done while asleep in the OR and then a night in ICU.  After that, a two-week stay or longer in the epilepsy monitoring unit where my medications would be stopped.

My husband and I have decided to stopped the process right now.  I will be making a return visit to UVA at some point for a complete rundown but we are no longer prepared to continue the surgery process.  We’ve been told that everyone is different and we are open to that.  We’ve also been told that I am not an open and shut case.  The statistics we’ve been given are not great.  This is very rough but we are told approx. 60% of seizures are temporal lobe and 40% frontal.  I am frontal.  I was also told that I don’t make up that 40%.  I am a small % within that 40%.  For me, having surgery and then still having to take two meds, that’s not enough for me.  Our life is affected daily because of my condition.  My husband takes on so much.  My daughter is affected in many ways and they may seem trivial to some yet as a mother they bother me.  If you ask either of them any day of the week they will tell you they aren’t bothered at all.  For me it’s not a decision that is mine alone.  My seizures are not controlled.  I have them often in the evening and throughout the night.  I have a history of daytime so that is the reason for no driving.  Over the last few months I’ve started twitching frequently during the day.  I just deal.  I am crazy affected by stress and sleep – my UD friends can attest to that.  I just always know it could be worse.  Honestly, I have come to some kind of acceptance with epilepsy.  Doesn’t mean I don’t have my days.  I know I am not the person I used to be.  I’ve changed.  I can’t really explain how or really what I mean.  My meds affect me, 17 anticonvulsants pills a day plus two vitamins.  In the end, I work through it and so do my husband and daughter.  Family and friends support us so right now we are good.  I was born with the malformation, it’s who I am.

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