Are your Anti-Seizure Medications Not Working?
Have you been told you are a possible surgical candidate, but need to learn more?
What other options are available to stop my seizures?
For any of you who are, like I was, living with refractory epilepsy - meaning the medications are not stopping your seizures, life with epilepsy is hard. The majority of people with epilepsy do everything their doctor tells them to do, but for about 30% of us, seizures remain uncontrolled.
After my epilepsy diagnosis in 1982, I lived for 10 years with focal impaired awareness seizures, while taking anti-seizure medications that weren't working to stop my seizures. But, the seizures were stopping me from doing things everyone else was able to do, including driving, working, socializing, and overall, just being independent and able to do things on my own.
When my doctor moved out of town in 1992, I had to find a new epilepsy specialist. That new epileptologist reviewed my medical history and said the most surprising three words to me that I will never forget: "Let's reassess you."
I didn't know what that meant. He then told me, "You might be a candidate for brain surgery." I was stunned.
I had always thought there were only medications to treat seizures. That's what I had done for the past 10 years. I tried to be "a good little girl" by taking my medications on time and not doing things that could potentially cause seizures. But my seizures continued, and there was no explanation as to why. I never knew there was another option for me.
Because I had focal seizures that every time started in one specific part of my left temporal lobe, doctors determined that taking out the 3 cm of my brain where my seizures originated could potentially stop my seizures.
On June 16, 1993, I had a Left Mesial Temporal Lobectomy. I cannot believe that my 31st anniversary of brain surgery, and so far, being seizure free is taking place on Sunday, June 16, 2024.
To celebrate this milestone, we are holding two special events, both on Saturday, June 15, 2024 at Empowering Epilepsy Headquarters:
1. Brain Surgery Conference from 8:30- 4:00 PM
2. Brain Surgery Survivors Celebration from 6:30 - 9:00 PM
Empowering Epilepsy wants to use this conference to better educate you on the following topics surrounding brain surgery:
Can I qualify as a surgical candidate?
How do doctors determine if surgery would work?
How much of my brain are they taking out?
What tests/procedures will take place, and what data do they provide?
What does a 50% chance of being seizure free after surgery mean?
Will I be able to live a normal life after surgery? How will the surgery affect me?
My first surgery didn't stop my seizures. How is a second surgery worth it?
What other options are available if I am not a surgical candidate?
Join us on Saturday, June 15, 2024 to learn more about Brain Surgery for Epilepsy.
Participants can join in person (you get to talk directly to doctors), or virtually via Zoom.
Click the link below to learn more and register. Contact Leigh Goldie at
Leigh@empoweringepilepsy.org or 216-342-4167 for more information.
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