Becky's Story
Becky's Advocacy/Story
An epilepsy center is a special unit in a clinic or hospital that provides a comprehensive care team for epilepsy. Epilepsy center specialists are experts who all work together to provide the highest quality and most complex care. When you're not responding to standard medical care or have persistent seizures, you should be referred to an epileptologist at an epilepsy center.
Approximately 30% of people with epilepsy seizures are NOT well-controlled with medicine alone.
SEEK ADVANCED CARE at a specialized Epilepsy Center:
*When seizures continue despite medical treatment for more than a year
*After the trial of two medications
*Are experiencing unacceptable side-effects
*Seeking a higher level of epilepsy care
Ask your doctor for a referral to a specialized epilepsy center.
In September 2012, a Level 4 Epilepsy Center surgically removed the focus of my seizures. My seizures ENDED immediately, my recovery was easy, and my memory had the ability to rehabilitate! I am no longer living in fear and prevented the possibility of SUDEP/Sudden Unexpected Death in EPilepsy. I became medicine-free.
A Level 4 specialized Epilepsy Center cured my focal, drug-resistant, refractory, Right Temporal Lobe epilepsy.
The focal point of my seizures was pinpointed at an Epilepsy Center in their epilepsy monitoring unit (EMU). They offer advanced diagnostic tools and tests to locate the origin of seizures. A specialized Epilepsy Center provides a comprehensive team approach to diagnose and treat epilepsy. Learn about an EMU/Epilepsy Monitoring Unit in the video "How an Epilepsy Center Can Help" here:
Utilizing a minimally invasive surgical treatment is a wonderful opportunity to support brain health. Since 2014, laser ablation has been used with increased frequency as an alternative to open brain surgery, as I had. Since the laser entrance is only about the width of a pencil, it offers a quick recovery.
At the age of one, I became sick with encephalitis. My seizures were infrequent starring spells that were considered to be daydreaming back then. At the age of 23, I began to have an aura. I could feel it, but others didn't witness it. The same year, I drove into the back of a semi-truck without feeling the impact. After the accident, I had an EEG, petit-mal seizures were diagnosed, and I went on medication.
Through the years, my epilepsy progressed. During my seizures, I would feel lightheadedness, nausea, and quietly hyperventilate. I was averaging one bad day every other week with multiple seizures on that day. I experimented with numerous medicines, always cock-tailed, while adjusting doses and mixtures. My electrical storm kept firing. I had drug-resistant, focal, refractory epilepsy.
I started having difficulty locating my car in parking lots. I became disoriented driving to family homes and had to consciously think about how to get there. I became forgetful of names and made lots of notes. I would retrieve the newspaper daily to see what day of the week it was.
When I expressed my concerns, people would say, “It’s a sign of getting older." I knew it was more than the normal aging process, for I was only 46 years old. My memory was deteriorating, and drug-resistant seizures were the cause.
It was time to seek advanced care at an Epilepsy Center. They have specialized physicians whose main focus is treating seizures. After my first appointment, I knew I was in the right place. My epileptologist was able to walk in my shoes. I set up a time to stay in the EMU and state-of-the-art tests were run to pinpoint exactly where my seizures were stemming from. These tests removed the “how do you feel” guesswork. Before my tests, I was the only one who could try to explain what was going on inside my head.
During my stay at the Epilepsy Center, my medicine doses were reduced. When my threshold was low enough, the seizures began. All my detailed movements were recorded on an EEG monitor and video camera. Every seizure I had hit the bulls-eye on the same target, every time. The other tests conducted hit the bulls-eye, too. I was an excellent candidate for a surgical treatment!
My right hippocampus had deteriorated. It was supposed to be plump like a grape, but mine looked like a raisin. The epilepsy neurosurgeon’s concrete decision was to have surgery. The main goal was to stop the seizures from where they were stemming from forever. Awesome!
I decided I wasn’t going to wait any longer…the seizures needed to stop! I wanted to make sure I remembered my kids' concerts, sports, and vacations. My decision to have surgery was clear.
The day of surgery came. My care was in the hands of a team of experts with groundbreaking research and state-of-the-art, computer-imaged-guided technology. Everything was explained, and I trusted them completely. We were all in this together.
After surgery, my brain breathed a sigh of relief, and I recovered better than I ever expected.
My story could be your story...
Have an evaluation at a specialized epilepsy center for advanced options to treat your seizures.
Out in public soon after surgery with no worries.