Today is PURPLE DAY! Are you wearing your purple?
Purple Day is a Worldwide
epilepsy awareness day that was founded by Cassidy Megan, and is celebrated
every year on March 26th. Visit www.purpleday.org to learn more!
Today I will share information about alternatives to medication.
For about a third of the population, medication does not
control seizures. This condition is
referred to as having “refractory” seizures or “intractable” seizures. For these people, one option is neurosurgery.
Seizures have a specific focus in the brain from which they originate, and if this focus can be
identified it may be possible to remove it surgically. The trick is to be able to remove the seizure focus while preserving function from that area of the brain.
Around 70% of people who have temporal lobe surgery actually become seizure-free, and
approximately 20% have a reduction in the number of seizures they have.
Amanda began advocating for neurosurgery for herself when she was
in the 8th grade.
We knew
that her seizures began in the left occipital
lobe, the area responsible for vision.
This is actually a rare type of epilepsy. Amanda would see flashing lights or colours,
and she often lost her vision for several minutes. She continues to have periods of temporary blindness
today.
Once extensive pre-surgical testing was complete, we knew
that she also had a second focus in the right parietal lobe. Parietal lobe
seizures are also very uncommon. Seizures in
this area of the brain can occur in clusters, happening frequently throughout
the day. They can “cause sensory
disturbances such as heat, numbness or electrical sensations, weakness,
dizziness, hallucinations, distortions of space and other symptoms.” (https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/focal-epilepsy) They can also result in “Todd’s Paralysis”
which is a temporary paralysis during the post-ictal stage of the seizure.
Given this information, Amanda chose to go ahead with the
surgery, understanding that she would never be able to drive as she would lose
a significant amount of vision. Her
feeling was that she already had visual anomalies caused by her seizures, and
that it would be worth it just to have a day with no seizures at all.
Amanda’s surgery was performed at The Hospital for Sick
Children with an amazing medical staff.
During the 6 hour procedure they discovered that her frontal
lobe also had extensive foci, too large an area to consider removing as this is
the area of the brain that involves executive functioning and decision
making.
The doctors decided to make small cuts along the frontal
cortex to sever connections and hopefully stop the seizure activity from traveling across
the lobe. These cuts are known as sub pial transections.
Seizures in the frontal lobe present in different ways; there
can be movement of the eyes and the head to one side, difficulty speaking, or unresponsiveness.
Symptoms include depression, impaired memory and a dramatic change in cognitive
function affecting executive processing, language, attention, and behavior. (https://www.epilepsy.com/living-epilepsy/epilepsy-and/professional-health-care-providers/resource-library/epilepsy-behavior)
In many cases, surgeons are able to isolate the focus
causing the seizures and remove it completely, allowing the patient
seizure-freedom.
In Amanda’s situation, they discovered that the first focus
in the occipital lobe went far deeper than anticipated and they could not
remove it entirely without leaving her completely blind. Her surgery drastically reduced her generalized seizures. Unfortunately, the partial seizures remained uncontrolled.
If you are interested in the brain, there is a picture
attached that shows Amanda’s brain with the occipital and parietal lobes
outlined for the planned surgery. If you
are squeamish, scroll past! Disturbing photos are marked "Warning: Graphic Image."
Medical knowledge and skills for epilepsy surgery are constantly improving. Technology has made a huge impact on what can
be done.
This article focuses on the areas of the brain affected in
Amanda’s situation. Seizures can originate in any part of the brain. To learn more about
epilepsy brain surgery you could investigate these links:
https://epilepsytoronto.org/about-epilepsy/learn-about-epilepsy/epilepsy-surgery/
https://www.uhn.ca/Krembil/Pages/epilepsy.aspx#Services
https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-epilepsy-surgery
Warning Graphic Image:
This was an image taken of Amanda's brain during the grid mapping. The yellow outlines indicate the areas the surgeon planned to resect. He found more than he bargained for when he got inside. Dr. Rutka was her amazing neurosurgeon. She told him she loved his surgical cap so he gave it to her!
Her brother shaved his head in solidarity when Amanda was preparing for surgery.
Her stuffed bear went into surgery with her, and came out with the same bandages. Bless the nursing staff at Sick Kids. They are so good!
Receiving her medal of bravery.
Warning: Graphic Image
Just a few staples and stitches to close up...
Sporting the pirate look to cope with double vision after surgery.
And best of all, a visit from the PAWS Therapy dog, Blue.
There's nothing like a dog to raise your spirits!Cute photo of Cable, just because.
