Epilepsy Surgery Patient Helps More People
“I feel so grateful. I have been given so much, and now I just want
to give back to the people who helped me like Dr. Millett.”
Amanda Wayne was ready for all of it to stop. The seizures. The medications.
The uncertainty that comes from growing up with
epilepsy.
She was ready to do something to remove epilepsy from her life forever.
But it wasn’t until a year ago, that she learned that there actually
was something she
could do.
From the time Amanda was diagnosed at the age of 8, she was seen by doctors and
neurologists in Central California who did not specialize in epilepsy medicine. They
managed her seizures well enough for her to get through school and college,
start a career and get married. But the seizures persisted, sometimes
a dozen or more a day.
When Amanda moved to Southern California, a neurologist referred her to
epileptologist
David Millett, M.D., Ph.D., at the
Pickup Family Neurosciences Institute at Hoag. From Dr. Millett, Amanda learned that the condition she had been
living with for 25 years came with options – and with risks.
“I had lived with seizures for so long and my quality of life was
OK, so I asked Dr. Millett, ‘What’s the problem if I keep
living with seizures?’” she said. “He was surprised
that I was blowing them off.”
For the first time, Amanda learned that her seizures could progress and
worsen. They could even be fatal. No doctor had ever put her condition
into perspective for her in that way, and Amanda believes she’s
not alone in that experience.
Recently, Disney Channel star Cameron Boyce died at the age of 20 from
what doctors believe is SUDEP, or sudden unexpected death in epilepsy.
SUDEP affects about 1 in every 1,000 people with epilepsy. But for patients
like Amanda the risk even higher: 1 in 150 with drug-resistant seizures
will die unexpectedly from a seizure. But is rarely discussed, even by
neurologists, until now.
“It’s unfortunate that someone had to die for people to talk
about it. Epilepsy doesn’t get the awareness that it needs,”
she said. “It’s hard to get an advocate for people who struggle
with epilepsy. I think people try to keep their condition quiet.”
In the absence of a celebrity advocate, Amanda is speaking up. She wants
everyone to know about the life-altering intercranial surgery she underwent
with Dr. Millett and neurosurgeon
Vivek Mehta, M.D., to remove the part of her brain that had become a maelstrom of seizure activity.
In fact, if you’re interested, she might show you the video.
“I asked Dr. Mehta to record the resection,” Amanda said. “I’ve
always been curious about science, and I just wanted to see what was happening
in my brain.”
What had been happening was near-constant seizure activity. Locating the
exact section of the brain that needed to be removed required a multiple-day
stay at the hospital, during which electrodes were placed directly over
and into the malformation.
Amanda said the care and consideration from the hospital staff made the
10-day experience feel as “normal” as possible. Her family
and in-laws even gathered in her room to watch the Super Bowl.
“The hospital was great. I couldn’t have asked for better care.
They were so kind. I can’t thank them enough for the support and
for going above and beyond,” Amanda said. “Everyone from the
phlebotomist to the people who clean the room, everyone in the
Epilepsy Monitoring Unit took such great care of me and were so great to my family, especially to
my husband. I am so grateful.”
During the brain mapping phase, Amanda experienced the first and only grand
mal seizure of her life. She said it was then that she really understood
just how bad things could get if she left her epilepsy unresolved.
“I didn’t know that I could have a grand mal seizure at any
time,” she said. “My husband was scared to death.”
The second-phase of the treatment involved the actual surgery. Amanda knew
that there were risks associated with removing a section of her brain,
but she said it was worth it to rid herself of seizures.
“One of the risks was temporary paralysis, and I thought, ‘Well,
I can do anything temporarily,’” she said.
The surgery was a success, and though Amanda struggled with speech and
dexterity issues for six months, she has recovered well – and is
seizure-free.
“I am slow to come up with words,” said Amanda, who returned
to work recently after her recovery. “I don’t know if I’ll
ever be the same, but I don’t care. If this is as good as it gets,
that’s fine. I just count my blessings.” By 9 months after
surgery, her speech was 95% back to normal.
Now, Amanda is dedicated to sharing her story to let people know about
surgical options and other specialized treatments for people who struggle
with epilepsy.
“People don’t know what their options are. Medicine has made
it possible for more people to be candidates for surgery, but there isn’t
enough awareness about it,” she said. “I feel so grateful.
I have been given so much, and now I just want to give back to the people
who helped me like Dr. Millett.”