Lucy – epilepsy and tumor

The Story of Lucy

My story:

Our only daughter Lucy, who is now 12-years old, was diagnosed with Tuberous Sclerosis. For the past ten years, we have treated her with medications as prescribed by her doctors. But the last few years have been the most heart-wrenching years for Lucy and our family.

During the months of December 2005 through February 2006, Lucy's seizures became life threatening. The seizures came every 10 seconds and Lucy's neurologist had her admitted to Cedar-Sinai Hospital. Lucy was hospitalized from the day after New Year's through the end of the month and no one could give us any reassurances or treatment plan for Lucy. She was placed in ICU and in a state of induced coma losing over 80 pounds in just a span of one month. It was unbearable to watch and endure.

Then, I met a guardian angel named "Conald." He was an EEG technician from Ronald Reagan UCLA Medical Center, who happened to be on an assignment at Cedar-Sinai. He saw how distraught I was and suggested I contact the neurology department at UCLA. I contacted UCLA and was able to meet with Dr. Joyce Wu and Dr. Gary Mathern. I found myself in a different world altogether offering us options with new hope for our Lucy.

Lucy was rushed into surgery in February of 2006 to remove the lower temporal tuber. That was the scariest moment of our lives. The surgery was a success and Lucy's daytime seizures were gone. But, another obstacle lay before us. According to an MRI, Lucy had a benign tumor "Astro Citoma Sega" which also needed to be removed. We were told that it would be difficult to remove the entire tumor but, again, in November of 2007, Dr. Mathern worked his miracle and was able to remove the entire tumor with success.

Dr. Mathern, who has been a god send, performed two successful surgeries, but Lucy still had remnants of her morning seizures. And, this time, surgery was not option. Dr. Mathern and his team recommended the Vagus Nerve Stimulation, which is working well for Lucy. We are hopeful that in time, Lucy's seizures will be minimized and she will soon have "control" over her seizures.

We know that Lucy, my husband and I still have a long journey ahead of us; however, just knowing that there are doctors such as Dr. Mathern, Dr. Lasky and Dr. Wu, and a great neurology team at Ronald Reagan UCLA Medical Center, gives us encouragement to never give up and always have hope.

The words "thank you" just doesn't seem enough when it comes to how my husband and I feel for the remarkable treatment and care of Lucy. We will forever carry gratitude in our hearts for your returning the gift of life to our daughter.

Thank you from the bottom of our hearts.

Simona and Tae

Lucy Case History

The Case History of Lucy

Lucy, age 12, tuberous sclerosis complex (TSC) presenting with status epilepticus and a large subependymal giant cell astrocytoma (SEGA).

Lucy is a young lady with tuberous sclerosis complex (TSC) who presented with two medical problems that required treatment. She was transferred in status epilepticus and with a large SEGA. Her medical and surgical management involved several steps. First, using scalp video EEG, MRI and FDG-PET we determined that her status was originating from the left temporal lobe where a large cortical tuber was located (see FDG-PET/MRI co-registration pictures). We removed the left temporal lobe which stopped the status epilepticus.

We followed her for several months with serial MRI scans. With these scans it became apparent that the right SEGA was growing. We tried rapamycin for several months which reduced the size of the SEGA, but the tumor quickly grew when the family elected to stop the medication.

A year and a half after her "epilepsy surgery" she went to surgery for successful removal of the SEGA. Her seizures returned, although less severe than before, so she underwent a third procedure to implant a vagus nerve stimulator when another presurgical evaluation failed to determine another cortical tuber for resection. While not completely seizure free, she is independent, talks about many things, and attends school.

Lucy's case represents what can be done for patients with complex problems, like those with TSC, using multi-disciplinary medical teams at a major medical center. Lucy's care involved UCLA's TSC center of excellence, and included a pediatric neurologist (Joyce Wu, MD) and pediatric oncologist (Joseph Lasky, MD) along with a host of others to diagnosis and treat her condition.

Neurosurgeon: Gary W. Mathern, MD

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