Sunday, November 2, 2014

Epilepsy Awareness Month Day 2: Surgeries and Seizures

Robert has tried everything possible to control his seizures.  He is on a bucket full of medications (and tried just about all of them), he has been in studies for the Deep Brain Stimulator and Vagus Nerve Stimulator

He also had two brain surgeries in his twenties. 

In 1990, Robert had a “Left Parietal Lobe Heterotopia Removal” and in 1991 he had an “Inferior Parietal Lobectomy.”

I don’t know much about these surgeries and, frankly, wasn’t involved in Robert’s care during this time. Robert lived independently in the same town as our parents and I was an hour and a half away with a young child. I visited with Robert on the holidays and called to check in on occasion. 

I recall our dad being opposed to the surgeries and heard him say for years afterward that Robert shouldn’t have had them.  Dad thought they caused Robert to have cognitive decline but he also had a very illogical view of doctors in general.

In other words, Dad wasn’t the best person to give a review of the surgical outcomes.

Robert wanted the surgeries.  He wanted to stop his seizures.  As Robert describes in his video today, he was having Tonic Clonic seizures 30 – 36 times a month.  (Robert calls them Grand Mal in the video which is what this type used to be called.) Robert was frequently in the hospital due to falls and injuries from these seizures and, in my opinion, would not have survived as long as he has without the surgeries. 

Robert was an adult and it was his decision.  He went forward with both surgeries, in spite of not being supported by our dad.  It shows great courage to go forward with something as major as brain surgery (and not one, but two), without complete family support. 

Robert had the surgeries and his seizures actually did change.  He no longer has Tonic Clonic seizures but has Complex Partial seizures now.  The frequency varies but he still has a couple dozen or three (or four) a month.  His seizures over the past year or so have come in clusters so he might go three or four days without a seizure and then is besieged by an onslaught of six in a day. 

Even at age 49, Robert is still working with his epileptologist to find the magic combination of medications to stop his seizures.

It has taken me years to realize this but Robert is both courageous and full of hope.  In the video today, Robert talks about his seizures and the surgery he had in 1990.

Be sure to let us know if there are any questions you have about the information presented this month and if there is anything else you’d like to know about the impact epilepsy has had on Robert.  We will do a “question and answer” video later in the month and would love to include your questions! 

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