Never Lose Hope – Heidi

Never Lose Hope – Heidi

In 2004, during my senior year of high school, I woke up on the ground.

I was captain of the varsity tennis team and opened my eyes. There I was, laying on the tennis court, unable to hear a single thing. Other students were staring and the coach was trying to ask me questions. A few minutes later, I began to hear a loud ringing. Then, after another few minutes, my hearing finally came back and I learned I’d been hit in the head with a tennis ball, by a strong young man who had competed at the Texas state finals in power lifting. He was built of muscle and had an incredibly strong tennis serve.

I’d suffered a concussion and thought, “That was it. I’ll be fine.”

Little did I know, it would lead to numerous types of seizures (mostly absence and petit mal, now called “typical absence”), years of medication and two brain surgeries. It was a fairly hard hit to the head. Although the tennis ball physically hit the right temporal lobe, its impact was so extravagant, the brain moved and actually caused damage to the left temporal lobe.

Epilepsy had entered my life.

Fast forward and let me introduce Shiner. Just after college, my roommate adopted a Labrador-boxer mix from a shelter, and in a miraculous way, he had a pretty extraordinary talent. Generally, Shiner leans his entire body against a person to say hello, but seconds before I would have a seizure, he would do the exact opposite: stand in front of me, sit down and look up. After he did this a few times, and I woke up on the floor, I caught on and realized this dog was pretty remarkable. On days he followed me around the house, not leaving my side, I would know to take a seat. The seizure had already started even though I was not aware, and Shiner could sense it. Pretty incredible.

In 2013, my husband Clayton and I traveled to Houston for a specialized neurologist, Ian Goldsmith, MD, who was known for remarkable work involving epilepsy. After maxing out on Lamictal, Keppra XR, and Zonegran, still unable to control seizures, Dr. Goldsmith brought up the idea of surgery.

“Really? I could qualify as a candidate?,” I asked.

Years before, other physicians had told me I would be on medication forever and that surgery would never be an option. Here we were, 10 years later, and learned the exciting news.

Tests prior to surgery included Wada, EEG, VEEG, PET, EKG, CT, neuropsychological study and several other pre-operative tests, all at St. Luke’s Episcopal Hospital in Houston, TX.

On Monday, February 17, 2014, Daniel Yosher, MD, neurosurgeon, performed a craniotomy and placed an electrode strip directly onto the left temporal lobe for mapping. Fortunately, temporal lobes stick out of the brain, making these surgeries a little less risky than others.

Over the next few days, seizures were induced, by limiting medication, to learn their exact origin in the left temporal lobe. During this time, a group of medical students also asked if I could be part of an epilepsy research study involving seizures and the eyes in the EMU (epilepsy monitoring unit), and I easily agreed. It was fun, and now I’m officially in a medical book.

On February 19, we learned the needed information was obtained and the team was able to perform a left temporal lobe resection. Surgery began early that morning and I opened my eyes that evening with a large amount of gauze around my head.

The neurosurgeon removed part of my left temporal lobe, totaling about the “size of a thumb.” It’s pretty ironic such a small area is what had kept me from living life to its fullest. I was discharged from the hospital on Saturday.

Fortunately, I didn’t have a single seizure for over 6 months. I couldn’t believe it.

Then, sadly, work and volunteering with non-profit organizations caught the best of me, and I had forgotten to take three full days worth of medicine. THREE FULL DAYS. That amounted to 10,800 mg of seizure medication – cut cold turkey. Oops! I spent a night in the hospital, as you could probably guess, recovering from seizures.

Since then, and after speaking with Goldsmith, I’ve been more adamant about taking medication, and am now down to only 1,850 mg of Keppra per day. I am completely weaned off of the other two medications. I look forward to finally being off Keppra as well, whenever that day may come.

Also, both my OB/GYN and neurologist agreed that Keppra was an excellent seizure medication to be on during pregnancy. Clayton and I started trying to grow our family, and in December of 2016, we had a beautiful, healthy baby boy.

As I have told numerous people who have asked questions, surgery has come so far, so fast – you should never give up hope.

Although my story began on the tennis court, I have not let it stop me from picking up a tennis racquet. I will forever love tennis. I’m currently the president of a local non-profit tennis organization and will continue to play as much as I can every week. I have not let epilepsy slow down my life, and I never will.

As I say to everyone who approaches me with questions, doctors are on the brink of finding a cure. Finding a fix. Laying epilepsy to rest. When my seizures began over a decade ago, the physician told me I would be on medication the rest of my life. However, here I am now, two surgeries later, down from three full medications to less than one, and everything is great. I haven’t even had a single aura in over three years.

Never give up. The Big Man upstairs has a plan, and patience is key.

It. Will. Happen.