Epilepsy Awareness Month: Surgical Options

Robert’s Epilepsy was considered uncontrolled, otherwise known as refractory or intractable. I always called it intractable but either is correct.

Epilepsy is classified as intractable after two anti-seizure medications fail. Robert’s seizures continued after several (and I mean several) anti-seizure medications and combinations of medications failed. This happens for approximately 30 percent of people living with Epilepsy!

Medications aren’t the only treatment option for Epilepsy though. There are several surgical options and Robert tried several of those as well. The Epilepsy Foundation has some good information about the different kinds of surgeries for Epilepsy so I won’t go into all of them.

I do want to tell you about the surgeries Robert had. Robert was willing to try anything to control his seizures – even surgery.

Shortly after Robert was diagnosed, Robert was about seven years old and our parents wanted him to see the best neurologist in the world. That seemed pretty far-fetched since, believe me, we did not have Kardashian money, but our parents did love us kids so I can’t really blame them for wanting the best for Robert.

They found a neurologist and was able to get an appointment. In Switzerland!

I always wondered who they had seen and while searching for photos after Robert died, Rich and I found a piece of paper with the neurologist’s name! How crazy is that?! That surgeon said he could not do surgery on Robert but I looked him up and it turns out he really was the best! He was chosen as “Neurosurgery’s Man of the Century” in 1999.

I need one of those shocked face emojis right about now.

Robert didn’t have surgery when he was seven years old but he did have two Brain Resections in his twenties. They helped some in that he no longer had Tonic Clonic seizures but he did still have seizures.

Robert also participated in a trial for the Vagus Nerve Stimulator and then the Deep Brain Stimulator.

2021 DBS Surgery

Once the Deep Brain Stimulator was approved by the FDA to treat Epilepsy, Robert had that implanted. It had shown promise when he was in the study so we had hope it would help him. Robert had the DBS implanted in 2021 and, if I understand it correctly, it works better and better over time. That seemed to be the case for Robert as we thought his seizures were decreasing! His wonderful neurologist and I were very hopeful for the future! (Unfortunately this last visit to the neurologist was three days before Robert died.)  

Our hope was that Robert could reduce or eliminate some of his anti-seizure medications since all the side-effects of the medications are just awful. For Robert, the worst was the Depakote! That was brutal on his liver and he was consistently living with high ammonia levels making him pretty drowsy.

While Robert’s surgeries weren’t a miracle cure for him, they can help and they did help him. I personally know (okay, I know her through social media) at least one young lady who had a major surgery for her Epilepsy and it stopped her seizures. She’s been seizure free for many years now. When that happens, it is a miracle!

And, as you know, we are all about miracles around here!

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!