For people with tuberous sclerosis, why does the whole tuber need removal?

Dr. Aria Fallah, MD

For people with tuberous sclerosis (TSC), the whole tuber needs to be removed because incomplete resections of tubers don't work for treating epilepsy. If only part of a large tuber is removed that doesn't work and doctors generally have to go back and remove all of the tuber. To have a good outcome, it's very important to not only remove all of the tuber, but all the way down to the ventricles as well.

A good resection usually means that the surgeon ends up in the fluid spaces of the brain at the end of the operation to remove all of the abnormality. Just removing a small piece on the surface may cause seizures to be generated from those deeper abnormalities in the brain.

Analysis of high frequency oscillations (HFOs) both prior to and after the surgical resection is very helpful in telling doctors whether there's further tissue there that can cause seizures. It's very important to not only check before tissue removal, but sometimes also after to make sure that the resection doesn't need to be extended in any way to achieve seizure freedom.

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