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Olivia’s Story

Site created on April 29, 2018

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Olivia, diagnosed shortly after birth with Tuberous Sclerosis Complex, has suffered from significant Epilepsy since birth. She has been awaiting surgery for almost a year, as of this month. A year ago, we spent a week in the hospital only to find out that the results from the numerous tests were "inconclusive" and that we would need a few more. Over the summer, we trialed a few more, but they as well were inconclusive. Olivia's tumors were too close together for the doctors to tell their point of origin, and so the solution to that was to perform an SEEG. We were told she would need to be at least two years of age to complete this surgical procedure, as her skull would need to be thicker (2mm) in order for the electrodes to secure properly.

Now she is two years old, so on Thursday this week, we will go in for the SEEG, which is an 8 hour surgical procedure where they will place "deep" electrodes inside her brain. These will be left in her brain to monitor the seizures for a week, creating a "brain map", and for a week we will be camped at Children's awaiting the results. If the results are decisive enough, we are hopeful that they will be able to go in a week later, on May 10th, and remove the troublesome tumor through an already open hole.

The second scenario is that, if the results are not quite definitive or the tumors are just too close together to quite tell, they will do a full craniotomy to re-sect the right temporal lobe, which is a more involved surgery with a longer recovery period. The third, and most undesired, scenario is that the seizure activity is now cross-hemisphere, meaning they would be unable to remove any of the tumor. This third scenario is less likely, but still a possibility given that it has been so long since these seizures began, and they have undergone many changes since they appeared 18 months ago.

Newest Update

Journal entry by Carol Palmer — Oct 31, 2018

So she came through like a champ🤗
We didn't get to see her until after 5 so hence the late update. She was awake and letting us know she was all done, not the happiest maybe, but she did smile once or twice and settled in to watch some utube with dad at 7:30. She was quite tired.
we may go home tomorrow but might stay til Friday. Emmett was great given the day.
Love you all.
carol

Read More of the journal titled "Post surgery"

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