Surgery Facts

Why surgery:

100% of Jackson’s days and nights are in subclinical seizures.  Eventually, the one medication that’s holding them to a subclinical level will wear out … because NO medication will stop it … and Jackson will then be in a full blow constant outward (clinical) seizure.  That no medication can stop.

All the activity that this left hemisphere is doing is also keeping the right side (presumably healthy) from functioning properly.  The longer the left hemisphere is there being ‘busy’, the higher the chance the right hemisphere has of taking on the subclinical or clinical seizure activity.  In other words, in order to keep the right side healthy, we have to stop the left side.  The surgery is necessary to stop the left side from it’s constant seizure status.

Hemispherectomy:

We have to disconnect the entire left hemisphere from the right.  That means, a piece of his left hemisphere would be removed in order to reach the central connections (center) of his brain where they would disconnect the two halves.  It’s called a Hemispherectomy.

Why now:

It has been said, since Jackson was 9 months old that he had an intrauterine stroke.  It was explained to us by a neurologist that he could see that it was within the 1st trimester because of the development of Jackson’s brain on the left side.  It was explained that it was the left frontal lobe only.

It’s not.

The MRI shows that the ENTIRE left hemisphere of Jackson’s brain is malformed.  All of it.  There is absolutely NO indication of an intrauterine stroke.  It also did not happen at birth.  It looks to be the true example of “sometimes these things happen”.  And, quite honestly, a miracle that he’s here…and functioning as well as he is.

The EEGs have been showing his seizure activity as focused / limited to one area.  That’s not so either.  It’s actually the entire left hemisphere that’s not only malformed but is also constantly seizing.

One significance of this, besides the misdiagnosis, is that *that* misdiagnosis has lead us and Jackson down a wasteful road is that NO medication…NO medication would have EVER touched the epilepsy because of the malformation.  He would have had this subclinical epilepsy since a young age…likely since the age we starting asking doctors why he wasn’t sleeping… 1.5 – 2 years of age.

Since NO medication will have (or will ever) work because he has a malformation of the entire hemisphere, surgery would have been his only option – this whole time.


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