brain surgery...

the brain surgery's still on hold for me until i lose enough weight for the neurosurgeon's liking (prolly about 25 lbs)...meanwhile, a co-worker of mom's has a nephew in california that had a very similar surgery, and there was an article in their paper that she sent the link to (gonna go ahead and copy/paste in case their links don't last too long)...

Surgery helps Alameda teenager eliminate epilepsy, medication
14-year-old enjoying normal life after recovery
By Kristin Bender, STAFF WRITER

ALAMEDA — Daniel Burlingame is a far different kid today than he was two years ago.
His eyes are brighter, and he's more animated. He isn't groggy or bloated from his epilepsy medications.

And he no longer takes handfuls of seizure medication or struggles with pounding headaches that left him drained.

Daniel can now swim and bike and do normal teen things without the fear of a seizure.

His grades have jumped up dramatically, and he even got a volunteer summer job at an Alameda preschool.

There, no one even noticed the scar on his head, where doctors sewed 21 stitches. It's barely visible.

It has been nearly two years since Daniel, now 14, had part of his brain removed in a last-ditch effort to stop the epileptic seizures that had plagued him nearly all his life. He hasn't had a seizure since the surgery and has been off his medications for a year now.

"This is how well Daniel should have done. There is a very high success rate for this surgery," said American pediatric neurosurgeon Dr. Benjamin Warf, a family friend of Daniel's parents, Bob and Esther Burlingame, who recommended the surgery three years ago.

Warf moved from the United States to Africa five years ago toperform neurosurgery on the poorest of the poor children at CURE Children's Hospital of Uganda. But when he met Daniel and his family while on a holiday in the states in 2002, Warf quickly recommended the surgery.

"What is essentially removed during this surgery is bad brain. Even when a seizure is not going on actively, there is disorganized electrical activity that can interfere with learning and thinking," said Warf, a Harvard graduate.

The Burlingames had inquired about surgery before meeting Warf, but doctors at Children's Hospital Oakland said it wasn't an option because Daniel hadn't tried some available medications, Esther Burlingame said. Kaiser wasn't recommending surgery either, she said.

"Even neurologists tend to under-refer for that procedure," said Warf, who was in Alameda last week visiting his in-laws and saw Daniel for the first time since he had the surgery and has been seizure-free.

"He looks good. He's grown, his face has thinned out," said Warf, who also performs the brain surgery on children at his hospital in Uganda.

With the surgery, doctors claim there is a 60 to 75 percent success rate for curing epilepsy and a nearly 90 percent success rate of drastically reducing it. Daniel had the surgery at Lucile Packard Children's Hospital at Stanford University, and doctors there have given him the OK to only return annually for checkups, Esther Burlingame said.

That's all fine with Daniel. He'd still rather play with his dog, Jason, or ride his bike than talk about epilepsy or medications or doctor stuff.

He's better, but he's still a kid of few words on the subject.

But when asked what the best part of his life is now, he doesn't hesitate.

"Being off the medications," Daniel said.

Daniel had his first seizure in 1992 when he was 10 months old, following a fever that quickly rose to 106 degrees. That seizure lasted 45 minutes, but he didn't have a second one for five years. At that point, doctors determined he had epilepsy, which 30,000 children are diagnosed with each year.

In 1998, he had a seizure on his school playground that was so bad Daniel didn't know his own name or where he was after the episode.

More seizures followed.

So did more medications.

Different medications.

Different combinations of medications.

When Daniel went under the knife in September 2003, his parents didn't know what to expect.

They were told Daniel might have problems with speech, movement and memory because those functions are controlled by the part of the brain that was removed — the hippocampus.

Doctors warned that he might have problems recalling shapes or remembering directions.

Surgeons were removing the anterior temporal tip, a part of the brain about the size of a matchbox and the right hippocampus, about the size of a thimble, and the scarred portion that had been causing Daniel's seizures.

The five-hour surgery went well and Daniel emerged groggy and somewhat disoriented, but healthy and strong. He stayed on the medications for a year just to be safe, but was seizure-free during that trial period.

His health, general well-being and school work steadily improved.

"He was below grade level before (on standardized tests)," said Esther Burlingame. "Since the surgery, he's caught up three grade levels on the tests."

Daniel has a twin brother, Matthew, who has never suffered from epilepsy or seizures.

Having the twins on an "even playing field" is helping Daniel make progress — physically and emotionally, his parents said.

"It's still going to take some time to even out completely, but I can see him making that gain," said Esther Burlingame.

His parents said the biggest blessing is that Daniel, like Matthew, now has a chance at normal life. He will be able to get a driver's license in a couple years, study in the field of his choice and enjoy sports and leisure activities without worrying about having a seizure. "He won't have any restrictions put on his life," said his father Bob Burlingame, 45.

These days, Daniel is spending three mornings a week with a group of 10 4-year-olds at an Alameda city parks and recreation pre-school class.

"He's been a pleasure to have in class. The kids love him," said pre-school teacher Gloria Garcia, who said she didn't know Daniel had previously suffered from epilepsy or about the surgery until he told her a day before a reporter and photographer visited him in the classroom.

"We had no idea," she said. Garcia said she is just happy to have Daniel to help out with play time, recess and crafts. He brings toys from home — bristle blocks and books — and sits on the floor with the group teaching and talking.

It is with children, at the pre-school, at his church and in his neighborhood, that he seems to be the most at home. "He's a sweet kid," Garcia said.


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so, there are a lot of things in common with my situation, and there are a lot of differences, as well. i don't think the hippocampus will be involved in my surgery, it's just my temporal lobe that's problematic. (as an aside, i must say, i've always found hippocampus to be a rather amusing word - it gives me a visual of the place that a hippopotamus would go to get an education)

i really wish i would've taken the neurologist's advice a couple of years ago and had this surgery then, but the whole idea of BRAIN SURGERY freaked me out and i pushed for the Vagus Nerve Stimulator surgery as a compromise. *sigh* oh well, can't change the past, i just have to get the weight lost and get this surgery done so i can get back to maybe being a productive human being...